tag:blogger.com,1999:blog-29847351127744987512024-02-20T14:05:19.031-07:00Tube TalesNoah's Parents' journey. A baby with no desire to eat, tube feeding, and no diagnosis.Dykstrashttp://www.blogger.com/profile/00490149516314290697noreply@blogger.comBlogger66125tag:blogger.com,1999:blog-2984735112774498751.post-69039602968164157962012-11-14T08:24:00.002-07:002012-11-14T08:24:24.778-07:00The tube is gone<span style="color: #20124d;"><b>Noah's PEG Stomach Tube was removed last Tuesday. He is recovering very very well. He has started eating great again. It has been simply amazing to see how well he has done. </b></span><br />
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<span style="color: #20124d;"><b>This marks the end of my time as a blogger.</b></span><br />
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<span style="color: #20124d;"><b>I began to write just before Noah came into our lives and the blog turned into a place where I could honestly share our experience, our heartache and now our joy in the journey of tube feeding.</b></span><br />
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<span style="color: #20124d;"><b>I'm finding it all hard to believe! But it is true, Noah is an full on oral-eater, demanding his waffles and "bear" cereal, and being almost 3 years old in every way imaginable! </b></span><br />
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<span style="color: #20124d;"><b>For myself I need to "turn off" this blog, to turn my attention to family, parenting and work in a non-medical framework (which is taking some adjustment but in a positive way).</b></span><br />
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<span style="color: #20124d;"><b>I thank you all from the depth of my being for sticking with us - when we couldn't talk, when we needed your help and you came to our door or email inbox with encouragement, prayers....to those who literally crawled in my bed when I felt I couldn't go on.......you know who you are..............</b></span><br />
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<span style="color: #20124d;"><b>I will not forget this experience and your love as long as I live. </b></span><br />
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<span style="color: #20124d;"><b>Praise God for this gift of healing. We are so grateful. </b></span><br />
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<span style="color: #20124d;"><b>Signing off, </b></span><br />
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<span style="color: #20124d;"><b>Darlene</b></span>Dykstrashttp://www.blogger.com/profile/00490149516314290697noreply@blogger.com0tag:blogger.com,1999:blog-2984735112774498751.post-2230672271062158882012-08-11T21:01:00.000-06:002012-08-11T21:01:01.183-06:00Never Once Did We Ever Walk Alone....<br />
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<b><span style="background-color: white; color: #351c75; font-family: Verdana, sans-serif;">Standing on this mountaintop </span></b></div>
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<b><span style="background-color: white; color: #351c75; font-family: Verdana, sans-serif;">Looking just how far we've come </span></b></div>
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<b><span style="background-color: white; color: #351c75; font-family: Verdana, sans-serif;">Knowing that for every step </span></b></div>
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<b><span style="background-color: white; color: #351c75; font-family: Verdana, sans-serif;">You were with us </span></b></div>
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<b><span style="background-color: white; color: #351c75; font-family: Verdana, sans-serif;">Scars and struggles on the way </span></b></div>
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<b><span style="background-color: white; color: #351c75; font-family: Verdana, sans-serif;">But with joy our hearts can say </span></b></div>
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<b><span style="background-color: white; color: #351c75; font-family: Verdana, sans-serif;">Yes, our hearts can say </span></b></div>
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<b><span style="background-color: white; color: #351c75; font-family: Verdana, sans-serif;">Never once did we ever walk alone </span></b></div>
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<b><span style="background-color: white; color: #351c75; font-family: Verdana, sans-serif;">Never once did You leave us on our own </span></b></div>
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<b><span style="background-color: white; color: #351c75; font-family: Verdana, sans-serif;">You are faithful, God, You are faithful </span></b></div>
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<span style="color: #351c75; font-family: Verdana, sans-serif; font-size: xx-small;"><b>(lyrics from <i>Never Once</i> by Matt Redman)</b></span></div>
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<span style="color: #20124d; font-size: large;"><b>With tears streaming, I am so grateful to share with that our dear Noah is no longer relying on his gastric tube (g-tube) to sustain himself. What an absolute life changing, miraculous summer he has experienced. </b></span><br />
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<span style="color: #20124d; font-size: large;"><b>Noah himself can sing the lyrics to the song above. Each word is our family testimony of what was often a very dark journey. But God is faithful and was present every step. We are so aware rarely does a special needs child walk away from their challenges. We are so incredibly grateful, humbled and in awe of the healing Noah has experienced. </b></span><br />
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<span style="color: #20124d; font-size: large;"><b>On June 30 Noah was admitted to the Peter Lougheed Hospital in Calgary. That morning was the last time we tube fed Noah. He was not given anything, including fluids, in his g-tube from that point forward. It was a test of our reliance on God's comfort to see our son struggle to chew, shallow and struggle to understand hunger and respond appropriately. We never doubted our choice but were on our knees praying that this would be Noah's chance to become an eater. We had the support and care of a wonderful Dr. This man, Dr. Stephen Wainer, was the first medical professional to endorse our desire to try a tube wean with Noah. He saw that despite a tough start in life, Noah clearly had the ability to do a wean. We set aside the disapproval of many other Drs. and para-professionals and tried it.
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<span style="color: #20124d; font-size: large;"><b>With joy, we have said good bye to using his g-tube for feeding, medications, fluids. With amazement, our son no longer retches. At all. Ever. He doesn't cough. He sleeps all night long and enjoys a nap daily. He is so so happy and cheerful. He has maintained his weight for several weeks. He is learning the art of chewing, flavours, smells and the social elements of eating with others. He still has to gain weight. It will come. He still has to face surgery to remove the tube and deal with the infected granulation tissue on his stoma site (tentatively scheduled for November 6). But there is no looking back. </b></span><br />
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<span style="color: #20124d; font-size: large;"><b>Noah is an oral eater. It is still a bit hard to believe. Never once did we ever walk alone. </b></span><br />
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<span style="color: #20124d; font-size: large;"><b>Thank you God for this gracious gift of renewed health for Noah. Thank you to all our supporters who helped us. To our friends and family who checked in, some of you daily, to cheer us on, to listen to us cry, to encourage us when we felt lost. I have stacks of cards from friends who wrote prayers, notes of hope and encouragement. Thanks to those who asked questions and tried to understand tube feeding better. Thank you for praying. Thank you to Noah's little buddies for including him in things even when he wasn't sure how to participate in eating and now for licking many ice cream cones with him! </b></span><br />
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One of Noah's first "meals" at the Peter Lougheed Hospital - chocolate pudding was a favourite early on!</div>
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Eating an ice cream from Grandma while we enjoyed a few hours at the Calgary Zoo. There is a huge joy in watching a little boy lick and lick at an ice cream!</div>
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Playing in the "kitchen" for the first time and pretending to cook.</div>
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Eating. Amazing.</div>
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If you are currently tube feeding your child and you need any support, encouragement, tips on blenderized feeding, more details about our experiences along the way and the tube weaning process, please leave a comment below with your contact details and I"ll get in touch.<br />
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If you are interested in listening to "Never Once" by Matt Redman, here is the link:<br />
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<a href="http://www.youtube.com/watch?v=722zPX1npcA">http://www.youtube.com/watch?v=722zPX1npcA</a><br />
<br class="Apple-interchange-newline" />Dykstrashttp://www.blogger.com/profile/00490149516314290697noreply@blogger.com1tag:blogger.com,1999:blog-2984735112774498751.post-20980307465730573332012-02-07T13:19:00.020-07:002012-02-08T03:46:15.607-07:00About time!<div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBGwtMx_ZUcTrvJt97zQoFJ7QviAU_-Sy3V54xGA4omuBt88750_nc9lBCxf8qC4fTeyh-plgHM_oZ5hwBJbQaxPFCB5Km6i_6JBlB05GSY8AJyE6VjqGaKEPDMfr43wCYcC1dnN1qXhAX/s1600/DSC_4916.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBGwtMx_ZUcTrvJt97zQoFJ7QviAU_-Sy3V54xGA4omuBt88750_nc9lBCxf8qC4fTeyh-plgHM_oZ5hwBJbQaxPFCB5Km6i_6JBlB05GSY8AJyE6VjqGaKEPDMfr43wCYcC1dnN1qXhAX/s320/DSC_4916.JPG" alt="" id="BLOGGER_PHOTO_ID_5706494414583701410" border="0" /><span style="color: rgb(204, 0, 0);"><span style="font-weight: bold;">My morning snuggle crew!</span></span></a><br /></div><br /><br /><div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjW6HIAop4zZPttqRxN7hNxv15pWLyb_MW99xPr28ebt5gU6MtW5KctcfLOWKPgFvbWy8jj6sHQNFLWT2no0_MtYkKNex2hNv6ZofWO5OKpJGVezYhwSIaCFA-Yinl_FGS8-0j4-SR1EOjh/s1600/DSC_4895.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjW6HIAop4zZPttqRxN7hNxv15pWLyb_MW99xPr28ebt5gU6MtW5KctcfLOWKPgFvbWy8jj6sHQNFLWT2no0_MtYkKNex2hNv6ZofWO5OKpJGVezYhwSIaCFA-Yinl_FGS8-0j4-SR1EOjh/s320/DSC_4895.JPG" alt="" id="BLOGGER_PHOTO_ID_5706494405994044466" border="0" /><span style="font-style: italic;">What a super cutie - covered in pudding!!</span><br /></a></div><br /><br /><div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEKvyrmr1yN_1GXUbOdilILca9UuQA8h5G-4dV8uj4vVXGJkJv6g6PBgMJRiywXFNdpFG3kSZ-vMMYjRf7hOpIndJah9EY00CniM4rGHgw1fG1HFq1WhYswLoER_kEdsn47DmjySfPEIHc/s1600/DSC_4888.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEKvyrmr1yN_1GXUbOdilILca9UuQA8h5G-4dV8uj4vVXGJkJv6g6PBgMJRiywXFNdpFG3kSZ-vMMYjRf7hOpIndJah9EY00CniM4rGHgw1fG1HFq1WhYswLoER_kEdsn47DmjySfPEIHc/s320/DSC_4888.JPG" alt="" id="BLOGGER_PHOTO_ID_5706494397969194962" border="0" /></a><br /><span style="color: rgb(0, 0, 153);">Oranges, processed cheese, cookies, milk, carrots..this momma is sooo happy to fulfill any of Noah's requests for tastings. If he asks for french fries, I drive to McDonald's and get some. He is doing a great job with biting and spitting out his food. He hardly ever retches with his tastings which tells us he is reducing his oral sensitivities. After a slow start in 2011, Noah has made big advances since the fall. I'm sooooo PROUD OF HIM. He is such a brave boy. I'm so grateful to be on this journey with him. </span><br /><br /></div><br /><div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIuBgzLMvLL4bW0avqT1TEy9Gd3UBfQGV6zvSVn9GwEbUJsz19DP3jCFmBCKFS-fiy4sD1q3Bb1W5ll4I8CU0h1b9GKY69ODQ4w3nJiJQQdYyJRT5II9TzkyvammO1IiZTDeFf1pkcA7A_/s1600/DSC_4925.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIuBgzLMvLL4bW0avqT1TEy9Gd3UBfQGV6zvSVn9GwEbUJsz19DP3jCFmBCKFS-fiy4sD1q3Bb1W5ll4I8CU0h1b9GKY69ODQ4w3nJiJQQdYyJRT5II9TzkyvammO1IiZTDeFf1pkcA7A_/s320/DSC_4925.JPG" alt="" id="BLOGGER_PHOTO_ID_5706494426621943698" border="0" /></a></div><br style="color: rgb(102, 0, 204);"><div style="text-align: center;"><span style="color: rgb(102, 0, 204);">Esther is sooooo much fun and a true loving spirit! She is so joyful and fun. She would like to catch up with her brother so she has started to crawl her way around the house! She truly completes our family. </span><br /><br /><br /></div><div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-MhnwHVk0WX4Gy0qy40psYw3HkWDCR8Fw53_8PeiFRYMiDrOXT1Re3sdK_NXT1djoS7zlWHwpXCQ_SA_-cQ-VOarK7xlEa3M_2784FzhJ2Yq9eCt-qBjs72QwnRQCqSpx_VLkD8w0lR5j/s1600/Disney.png"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 204px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-MhnwHVk0WX4Gy0qy40psYw3HkWDCR8Fw53_8PeiFRYMiDrOXT1Re3sdK_NXT1djoS7zlWHwpXCQ_SA_-cQ-VOarK7xlEa3M_2784FzhJ2Yq9eCt-qBjs72QwnRQCqSpx_VLkD8w0lR5j/s320/Disney.png" alt="" id="BLOGGER_PHOTO_ID_5706494438903780226" border="0" /></a></div><br /><div style="text-align: center; color: rgb(51, 102, 255);">December 2011: Disneyworld! Our 4 hours of fun after spending time with the Dykstra family in the Florida Keys. The trip was exhausted yet special. At Disney, Jared and I felt like kids again - I look forward to many more family adventures and a little easier time traveling as the kids get older. Jared and I love to travel and have had many lovely trips together. I hope I can pass the joy of adventure and exploring new places on to our kids!<br /></div><br /><br />Okay, so I've been a terrible blogger lately. I write lovely blogs in my head during the days but then I often feel zapped when the kids are resting or the evening comes and I want to get out with friends, exercise, work or simply hang out with Jared!<br /><br />Physically I was not feeling good for about 3 months. My eczema was out of control. I felt I could get things better and was trying all kinds of stuff. I finally went to the Dr. in January and started some oral steriods and blam - all better within days. I still have a couple weeks left of meds but I feel soooooo much better. Praise God for medical advancements and medication that can help get through minor things in life that can drag you down a bit. Added to that time, Esther was consistently sick with a cold which isn't a big deal but it is a bit draining day to day. She was very unwilling to drink from a bottle throughout that period and after 4 months of struggling we are weaning her to a cup. She isn't a great drinker but loves to eat!! I was encouraged when I saw she was growing out of her clothing and gaining weight. As a first time mom to Noah, I felt so discouraged so often that things I would try for him would fall flat and with Esther it is not nearly so daunting (different circumstances but still).<br /><br />I've been maturing a lot through my work. It humbles me, it challenges my faith, it energizes me. I'm really grateful to have a creative outlet and be working with a fine staff of folks and many dedicated volunteers. Also, I'm working on weight loss which is not something new for me but over the years I've found the tools that work for me well. It is a slow and steady ride but I'm seeing results which is encouraging. I'm taking an exercise class that makes me do stuff I've never even imagined I could do. It is good to be challenged. I like it. I need it. I'm thankful for it.<br /><br />Jared is busy busy busy with work. He is feeling good about the work he is doing, is challenged by it and puts in a lot of hours. In all our marriage, I've never seen him up so early in the morning! He continues to be a true parenting partner. There isn't anything he doesn't help with in terms of parenting. He is amazing. He takes care of all the "stuff" with home maintenance, cars etc. He lets me manage the money :-) He lets me be myself. He gives me breaks on the weekend so I can work a bit, enjoy friendships and take care of myself. He encourages me in my goals and never puts his own interests ahead of mine or the children. Selfless. He's really fun to be with and makes marriage a joy. He works as a volunteer in the technical ministry at church and really cares about making things work well there. We are very similar - we don't want to just do "good enough" but do enough that we've done it well.<br /><br />Noah, Noah, Noah....what an incredible 2 year old. A firey little spirit. A brave little guy who has some hard stuff to deal with each day. Loves a good ol' belly laugh. Loves to run, jump and play. I stand amazed at him daily. Low tone? Not holding him back. Hole through his stomach - no match for this little guy. He continues to impress the therapy team and while the journey to eating/drinking is a daily challenge, it has more joys as food is fun and we try to make it a positive experience. I keep being told by the therapy team that our connection with Noah and his needs is resulting in progress and I am seeing that. I have a great working relationship with all the therapists and give them ideas as they give me some back. I was asked to be a leader in a seminar series on parenting special needs children through the Child Development Centre. I turned this down due to time constraints but it was an encouragement to be asked. Another experience I get to credit to Noah and his presence in our lives.<br /><br />Noah is drinking from his straw cup every day, and every few days he'll just randomly yell out a food he wants! "Oranges!!!" And mommy comes running! We do a really good play picnic at 4pm daily - this is his best time of day for tastings. We work hard at incorporating food play into our day and while it is tiring to make blended food, pureed food, diet food and regular food (although Jared is the easiest going when it comes to eating so he'll go with whatever I'm making), I know this is only for a time. <div><br /></div><div>We are having fun as a family. We are enjoying life and praising our Maker for the gift of our children.</div><div><br /></div><div>Take care and happy tube feeding awareness week - check it out on Facebook!<br /><br />ps. HAPPY BIRTHDAY GRANDPA DYKSTRA!!! We love you and thank God for you.</div><div><br /></div><div>**HERE IS A LINK TO A RECENT NEWS STORY ON THE CALGARY PUBLIC LIBRARY - Noah and I were interviewed about library usage - his first TV role!</div><div><br /></div><div><a href="http://www.cbc.ca/news/canada/calgary/story/2012/01/29/calgary-public-library-record-busy.html">http://www.cbc.ca/news/canada/calgary/story/2012/01/29/calgary-public-library-record-busy.html</a> </div><div><br /><br /></div>Dykstrashttp://www.blogger.com/profile/00490149516314290697noreply@blogger.com1tag:blogger.com,1999:blog-2984735112774498751.post-34088477778772003572011-11-14T13:59:00.016-07:002011-11-17T13:29:20.326-07:00Almost two?<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNGRUREsvSIv6UXf5MW340UOG_eJOwJxUBH0WMG4FbnINcDtc2Q-O_yFu01WLLg0W41IcRTDvec12Ig4kVeP5p_auq2gz68BUuxVlIDN8jjrg-h14xA_9JyJmduYDmLTgIjgdXzP6DKLw4/s1600/DSC_4726.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNGRUREsvSIv6UXf5MW340UOG_eJOwJxUBH0WMG4FbnINcDtc2Q-O_yFu01WLLg0W41IcRTDvec12Ig4kVeP5p_auq2gz68BUuxVlIDN8jjrg-h14xA_9JyJmduYDmLTgIjgdXzP6DKLw4/s320/DSC_4726.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5675054271113331362" /></a><div style="text-align: center;"><span class="Apple-style-span" ><b><i>Look at our little taster - super comfortable around messy foods!</i></b></span></div><div style="text-align: center;"><br /></div><div><span class="Apple-style-span" ><b>Hi everyone!</b></span><div><span class="Apple-style-span" ><b><br /></b></span></div><div><span class="Apple-style-span" ><b>I can't believe how much time has gone by since I last wrote a blog! It is really a good thing since in that last months our Noah has been making wonderful progress!</b></span></div><div><span class="Apple-style-span" ><b><br /></b></span></div><div><span class="Apple-style-span" ><b>Here are the super cool things he can now do!</b></span></div><div><span class="Apple-style-span" ><b><br /></b></span></div><div><span class="Apple-style-span" ><b>1. WALK, WALK, WALK!!!!!!!!!!! He started a few weeks ago and has almost left scooting behind.</b></span></div><div><span class="Apple-style-span" ><b>2. Drinking small amounts of milk and water out of a Rubbermaid juice box. He is getting more comfortable holding his cup and is starting to expect getting it when he sits down in his highchair.</b></span></div><div><span class="Apple-style-span" ><b>3. Asks for food by saying "mum mums?" This doesn't happen often but it does happen. It is music to my ears.</b></span></div><div><span class="Apple-style-span" ><b>4. Loves to dance around the living room with me (so sweet).</b></span></div><div><span class="Apple-style-span" ><b>5. Is getting used to his little sister and wants to "check baby" or "see baby." He also enjoys bringing her a toy or blankie. </b></span></div><div><span class="Apple-style-span" ><b>6. Tasting a variety of foods - all of his "eating" is very hit and miss, depends on the circumstances and surroundings. But he is very willing to be part of the dinner table and very interested in what we are eating. He labels almost all food as "pizza" but what does it matter? He is trying and I've never had this much hope for Noah's future oral eating.</b></span></div><div><span class="Apple-style-span" ><b>7. His speech has advanced beautifully - he is speaking short sentences, copies us and makes more and more sounds and learns new words daily. </b></span></div><div><span class="Apple-style-span" ><b>8. He is so super smiley, loves a good gut laugh, gives us hugs and kisses and has turned into a little cuddle monster. We love it!</b></span></div><div><span class="Apple-style-span" ><b><br /></b></span></div><div><span class="Apple-style-span" ><b>Life is simple and sweet...full of giggles and silly faces (and diapers). I have taken a part-time job with our church which has been a wonderful blessing. Thanks for some excellent child care (Oma and Miss. Marie) I am able to put my energy into areas of passion other than my family. It has been very good for me. I'm thankful for this opportunity.</b></span></div><div><span class="Apple-style-span" ><b><br /></b></span></div><div><span class="Apple-style-span" ><b>As for the next months, we will continue our daily food play with Noah, giving him his homemade blended diet (which we love) and talk about planning a tube ween. That is the "big scary thing" in our world right now. But I cannot control that and I am constantly praying to release Noah's tube feeding as something I am grateful to be a part of rather than just a burden. I will admit it continues to be hard to see him retching but Jared and I do feel excited how willing Noah is to try tasting. We try to stay focused on that. Tube feeding is a stressful way to live but we know dwelling in the stress takes away the joy we have in raising our children.</b></span></div><div><span class="Apple-style-span" ><b><br /></b></span></div></div><div><span class="Apple-style-span" ><b><br /></b></span></div><div><span class="Apple-style-span" ><b>Here are a couple of newish pictures. Noah will turn 2 on November 24 and unlike last year, we are gonna party it up this year!! Noah is going to have a few little friends over for cupcakes and then our family will also have a celebration. Then, our next big adventure is heading to the Florida Keys area in December for a Dykstra family "reunion." </b></span></div><div><span class="Apple-style-span" ><b><br /></b></span></div><div><span class="Apple-style-span" ><b>Thanks for reading, for your constant encouragement, your prayers and mostly your presence in our lives (whether near or far). Take good care!</b></span></div><div><br /></div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizCDjrTlbAgdPMMtZep3uaDjPewI3kl6XZimVKu3XmQ5EnOQRn7EwqzwH0M72xoh1KR5AN45wqEO5Ob580usGbP4n6682x4W5r2siEgrtOo5M4ML3AmraIknv1MYgZ8Ve2WBxag4AqMEhM/s1600/DSC_4481.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizCDjrTlbAgdPMMtZep3uaDjPewI3kl6XZimVKu3XmQ5EnOQRn7EwqzwH0M72xoh1KR5AN45wqEO5Ob580usGbP4n6682x4W5r2siEgrtOo5M4ML3AmraIknv1MYgZ8Ve2WBxag4AqMEhM/s320/DSC_4481.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5674965996971176290" /></a><div style="text-align: center;"><b><span class="Apple-style-span" >Happy family</span></b></div><div style="text-align: center;"><span class="Apple-style-span" ><u><br /></u></span></div><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGAOey54rLO3f_SqmPzwcpbS0VtWKV9EQu7VLNNilgmqnUXNbEOVM7cMdajmrkX0gvB5bYXuMb0aPTLtS4NJPT4NGHTjrX9TjGQNSy3fE9XwaIpBGRunGSxFHI1SD2wL11LzIMtnkgc_5I/s1600/DSC_4511.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGAOey54rLO3f_SqmPzwcpbS0VtWKV9EQu7VLNNilgmqnUXNbEOVM7cMdajmrkX0gvB5bYXuMb0aPTLtS4NJPT4NGHTjrX9TjGQNSy3fE9XwaIpBGRunGSxFHI1SD2wL11LzIMtnkgc_5I/s320/DSC_4511.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5674963028962066866" /></a><div style="text-align: center;"><span class="Apple-style-span" ><b>Daddy and his monkeys</b></span></div><div style="text-align: center;"><br /></div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoGsDNUrQPQGgqntrAsVaHMXmu59MHXtBLOT5cagZD2zLqTMF5xG2qQMf0ZzzIFoN2DgkbIA_Vpb2CX2KZQp0tsyiWiEKJx9QdlbxAkSZxzvsHL0pVOOOBR1IfnCRgIgfoeRn3oyMrgkH8/s1600/DSC_4522.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoGsDNUrQPQGgqntrAsVaHMXmu59MHXtBLOT5cagZD2zLqTMF5xG2qQMf0ZzzIFoN2DgkbIA_Vpb2CX2KZQp0tsyiWiEKJx9QdlbxAkSZxzvsHL0pVOOOBR1IfnCRgIgfoeRn3oyMrgkH8/s320/DSC_4522.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5674963021279060610" /></a><div style="text-align: center;"><span class="Apple-style-span" ><b>Love the bib from Oma : I moose eat! (in pink and yellow - tehe)</b></span></div><div style="text-align: center;"><br /></div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOfjQ1YKmgu-W1poF_tHcsH3XqWAj5D0B7LTksl47XRhpCDXw2xMwAXzaGVwE93yAbRu0jdY-0jUK_GKYQU2M63Ryb76_sU7E8DVXddk06fGx3vCEgQlz0ct-bBbX9n8MPLOwlHfafAM3y/s1600/DSC_4716.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 213px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOfjQ1YKmgu-W1poF_tHcsH3XqWAj5D0B7LTksl47XRhpCDXw2xMwAXzaGVwE93yAbRu0jdY-0jUK_GKYQU2M63Ryb76_sU7E8DVXddk06fGx3vCEgQlz0ct-bBbX9n8MPLOwlHfafAM3y/s320/DSC_4716.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5674963015882075634" /></a><div style="text-align: center;"><span class="Apple-style-span" ><b>A new look in fashion BUT LOOK AT THAT STANDING!! </b></span></div><div style="text-align: center;"><span class="Apple-style-span" ><b>(thanks for the life jacket Uncle Andrew and Auntie Anika)</b></span></div><div style="text-align: center;"><br /></div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtOyqPPNnXYuUViQW-EmXYZmCGalL-lJZ1qD0tF3Gk3tlOVoHr2tpotl2IEd2zA2n4upm4UuYACSdRKNFexXEfy4oAM8_R4Ypb42nOuonsg9ZNDuBWTPdQognwfxE6oVSVwANO3y91b6KQ/s1600/DSC_4684.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtOyqPPNnXYuUViQW-EmXYZmCGalL-lJZ1qD0tF3Gk3tlOVoHr2tpotl2IEd2zA2n4upm4UuYACSdRKNFexXEfy4oAM8_R4Ypb42nOuonsg9ZNDuBWTPdQognwfxE6oVSVwANO3y91b6KQ/s320/DSC_4684.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5674963004517252498" /></a><div style="text-align: center;"><span class="Apple-style-span" ><b>Noah and his favourite cup</b></span></div><div style="text-align: center;"><br /></div><div style="text-align: center;"><br /></div><div><br /></div>Dykstrashttp://www.blogger.com/profile/00490149516314290697noreply@blogger.com0tag:blogger.com,1999:blog-2984735112774498751.post-69917108746459161582011-10-13T12:38:00.002-06:002011-10-13T12:41:34.222-06:00Dance, run, quad, Connor!Our friend, Connor passed away on Thanksgiving Day. His life had great purpose and now he is free from pain. We mourn and cry for our dear friends the Vanderveen family. <br /><br />Here are a couple of links you might want to check out.<br /><a href="http://www.legacy.com/obituaries/calgaryherald/obituary.aspx?n=connor-vanderveen&pid=154042286"><br />http://www.legacy.com/obituaries/calgaryherald/obituary.aspx?n=connor-vanderveen&pid=154042286</a><br /><br />Geraldine's blog:<br /><br /><a href="http://www.caringbridge.org/visit/connorv/journal">http://www.caringbridge.org/visit/connorv/journal</a><br /><br />Please pray for the family as they bury Connor this afternoon and as we gather to celebrate his life this evening.<br /><br />Blessings,<br /><br />DarDykstrashttp://www.blogger.com/profile/00490149516314290697noreply@blogger.com0tag:blogger.com,1999:blog-2984735112774498751.post-69761554761779786212011-08-16T12:48:00.011-06:002011-08-24T14:04:20.166-06:00Plugging along<div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrDRdQtOM36K2hsgtcLTYFQG5vwESCwBAhYhC7xG5tUfQBOBI8sSnkWzlV8ADvCEv_JzISF5uk0cfHRPUIjsOY34RHkeh5WxDgT40pBnI7jQxyRs14FREmEK8a_drYww1kCqKcX_j8p-JA/s1600/037.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrDRdQtOM36K2hsgtcLTYFQG5vwESCwBAhYhC7xG5tUfQBOBI8sSnkWzlV8ADvCEv_JzISF5uk0cfHRPUIjsOY34RHkeh5WxDgT40pBnI7jQxyRs14FREmEK8a_drYww1kCqKcX_j8p-JA/s320/037.JPG" alt="" id="BLOGGER_PHOTO_ID_5644510710272907762" border="0" /></a>
<br /><span style="font-weight: bold;">Trying a bit of walking with mommy's help - Noah likes his new heel cups that his physical therapist made for him!
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<br /></span></div><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhx-ikvGZ582ElEgENosCe_cU_kKhw27LoHLMjy-Jv01brbF7bxGpgWlqI2D_HcYJz_wrURQWJtIQrmD_60XobI7tQUum-81g2CGvhTKJIFHYPLh_sFXqxmRqzmqaqW88ziDpOqB4CopO3t/s1600/107.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhx-ikvGZ582ElEgENosCe_cU_kKhw27LoHLMjy-Jv01brbF7bxGpgWlqI2D_HcYJz_wrURQWJtIQrmD_60XobI7tQUum-81g2CGvhTKJIFHYPLh_sFXqxmRqzmqaqW88ziDpOqB4CopO3t/s320/107.JPG" alt="" id="BLOGGER_PHOTO_ID_5644510420497190306" border="0" /></a>
<br /><span style="font-weight: bold;">Summertime girl.
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<br /><span style="font-weight: bold;"></span><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwDQ34Lpwcff14zj4j_0SKxV_nA_LaRyrGxICSZgzB0W3UYd2l8Imi-nVbRgIlUjxUNp7FEV6elNJh8BX8pH76bkiveA3KwD9fcci9Prpdr0nmsGLxndxUVLvVPL7ccXjfZ2TKmFGZHhWv/s1600/102.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwDQ34Lpwcff14zj4j_0SKxV_nA_LaRyrGxICSZgzB0W3UYd2l8Imi-nVbRgIlUjxUNp7FEV6elNJh8BX8pH76bkiveA3KwD9fcci9Prpdr0nmsGLxndxUVLvVPL7ccXjfZ2TKmFGZHhWv/s320/102.JPG" alt="" id="BLOGGER_PHOTO_ID_5644509181006528530" border="0" /></a><span style="font-weight: bold;">Noah on his first beach day!</span>
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<br /></div><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhzAgId8nOlREc5h92YrEjjL-jkyZiI7x5uEsa-W5xcP5uSWGI2ZlKSoVAwUaYki_RwA0xDMfTuuvXgtfFbah-upk_r5epSQfSnF0ND0fHuWe4OE1kiXTNbXisfzKNek_urdU3Ig8NIFiE/s1600/DSC_4378.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhzAgId8nOlREc5h92YrEjjL-jkyZiI7x5uEsa-W5xcP5uSWGI2ZlKSoVAwUaYki_RwA0xDMfTuuvXgtfFbah-upk_r5epSQfSnF0ND0fHuWe4OE1kiXTNbXisfzKNek_urdU3Ig8NIFiE/s320/DSC_4378.JPG" alt="" id="BLOGGER_PHOTO_ID_5641531603543763986" border="0" /></a>
<br /><span style="font-weight: bold;">Playing with his big cousins - Kristopher tried feeding Noah yesterday and he did great. What awesome helpers! He proves ANYONE can do this tube feeding thing!</span>
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<br /></div><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihmY_GvyztnHolZ7I_rqWAZEYkMtySDXYWZ_y3ttx-nC2nG-lUHzBT5orVOkF6t15DhJhvb4DYTmjTGUnxa9nIK8NqaQXdVYjwpBYlWxD4OPeLYeoFZJEZABVxTfs5MaGbTB6G8C4ECk7m/s1600/DSC_4374.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 213px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihmY_GvyztnHolZ7I_rqWAZEYkMtySDXYWZ_y3ttx-nC2nG-lUHzBT5orVOkF6t15DhJhvb4DYTmjTGUnxa9nIK8NqaQXdVYjwpBYlWxD4OPeLYeoFZJEZABVxTfs5MaGbTB6G8C4ECk7m/s320/DSC_4374.JPG" alt="" id="BLOGGER_PHOTO_ID_5641531598443766514" border="0" /></a>
<br /><span style="font-weight: bold;">What a sweet baby our Esther is - reminds us of Noah and his sweet spirit in the beginning of his life (well more Jared than I since I spent many of those early months being ill)</span>
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<br /></div><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3d5wcGKyHw8HCNfxPp2swjVn0xM0Y9YVpWyfoui1Tp0DZXNvXUyQ-4IKI5qQ6NJVBg-D7n48Luze7lC20FA89WzKSmu-SXqozK4bUfiZbOUCUdkUJNHM9G91BO0d0edf9uIikvFYARApJ/s1600/DSC_4373.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3d5wcGKyHw8HCNfxPp2swjVn0xM0Y9YVpWyfoui1Tp0DZXNvXUyQ-4IKI5qQ6NJVBg-D7n48Luze7lC20FA89WzKSmu-SXqozK4bUfiZbOUCUdkUJNHM9G91BO0d0edf9uIikvFYARApJ/s320/DSC_4373.JPG" alt="" id="BLOGGER_PHOTO_ID_5641531596774433890" border="0" /></a>
<br /><span style="font-weight: bold;">Noah adores his daddy and his daddy's computer!</span>
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<br /></div><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnv2lOI-zpmmoRTalMn-PSS_vJIy_inx8Y8nTzcuxJQpGNgSdAz8eTw4REbfYMgJRiPOJZLylJMW__6wKA6LNWF1uF6o4DloWsoIwSVKmIGNTfRugOOz0GcBUI_fISobmLFF0lqLAw_Nd3/s1600/DSC_4383.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnv2lOI-zpmmoRTalMn-PSS_vJIy_inx8Y8nTzcuxJQpGNgSdAz8eTw4REbfYMgJRiPOJZLylJMW__6wKA6LNWF1uF6o4DloWsoIwSVKmIGNTfRugOOz0GcBUI_fISobmLFF0lqLAw_Nd3/s320/DSC_4383.JPG" alt="" id="BLOGGER_PHOTO_ID_5641531592258290658" border="0" /></a>
<br /><span style="font-weight: bold;">Daily play picnic with a bunch of different tastings. This is a type of therapy I do with Noah that allows him to taste foods in a fun way. It is pretty messy and he doesn't always participate, but we have fun trying.</span> <span style="font-weight: bold;">It is a little tiring to make food for Noah and then turn around and make his blended diet out of completely different ingredients...such is life with a non-eater!</span>
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<br /></div><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLEOT5_nD8vOdsd7RU2rfEm4ktRbhY3zIaSZZRP5J3dNvRflYFbAWxJGrqvIMDt7IMnoRufKerEzqWBmIUFi5xA72K4n9go2kjzAKu3GrrqB4IAzcBEEkY8NMXdkplTaVYbt__BnCcdyYp/s1600/DSC_4369.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLEOT5_nD8vOdsd7RU2rfEm4ktRbhY3zIaSZZRP5J3dNvRflYFbAWxJGrqvIMDt7IMnoRufKerEzqWBmIUFi5xA72K4n9go2kjzAKu3GrrqB4IAzcBEEkY8NMXdkplTaVYbt__BnCcdyYp/s320/DSC_4369.JPG" alt="" id="BLOGGER_PHOTO_ID_5641531582475885666" border="0" /></a>
<br /><span style="font-weight: bold;">Enjoying the sprinkler and a little drink.</span>
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<br /><div style="text-align: left;">How quickly the weeks fly by! We are enjoying summer, loving 3 feeds a day for Noah, watching Noah trying to walk with his new heel cups, trying not to think about weaning very much (hard to do), being discharged from pulmonary clinic at Children's Hospital, being sent back for further GI testing.....life is simple, delightful and filled with giggles. It helps to balance out the daily stress of tube feeding.
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<br />I find myself missing getting prepared for the start of the school year as this is the second year I haven't been teaching (and only taught for one year to begin with). I have a few new things going on in my life (see next paragraph) and some things I am considering in terms of my own career and personal growth. Please keep that in prayer if you have a moment - discernment and of course TIME MANAGEMENT!!
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<br />Please pray for our buddy Connor who is in the hospital. I marvel at your stamina and positive spirit, Geraldine. I am proud and honoured to now be part of the CASA (Caring Abroad Society of Alberta) Connor Board of Directors...if you are in the Calgary area, please join us for a Fiesta Fundraiser Dinner complete with Silent and Live Auction - September 24. Here is the current website soon to be updated:
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<br /><a href="http://www.caringbridge.org/visit/connorv">http://casaconnor.blogspot.com/</a>
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<br />And of course, keep up with Connor's journey here:
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<br /><a href="http://www.caringbridge.org/visit/connorv">http://www.caringbridge.org/visit/connorv</a>
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<br />Have a great end of summer!!!
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<br /></div></div><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dzNW5sAHE2a__7_rl4P3bAaWrogoVW6ijnuM_VWRO-0u-Skc7PNZXpgaeGMwaLvne8c_mm3pSZwEAK-57ll3A' class='b-hbp-video b-uploaded' frameborder='0'></iframe>Dykstrashttp://www.blogger.com/profile/00490149516314290697noreply@blogger.com0tag:blogger.com,1999:blog-2984735112774498751.post-59251839527291471722011-07-11T13:46:00.024-06:002011-07-20T20:21:45.838-06:00A new reality<div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJ8z5TPNulahH46l-Ig7F9tIkuy0tTW2IciK9_qdPlRTV2qPTyy2RBJS6y786RmL04wJAhKgbx5do-adzJTaJRWM6vT50V6-SceM8sRIQMhATuIAHmwnYhL0NgVxf7APJkHReYXHjwKURZ/s1600/DSC_4092.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJ8z5TPNulahH46l-Ig7F9tIkuy0tTW2IciK9_qdPlRTV2qPTyy2RBJS6y786RmL04wJAhKgbx5do-adzJTaJRWM6vT50V6-SceM8sRIQMhATuIAHmwnYhL0NgVxf7APJkHReYXHjwKURZ/s320/DSC_4092.JPG" alt="" id="BLOGGER_PHOTO_ID_5631624420206932274" border="0" /></a><br />Tossing a pine cone.<br /></div><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiN2WSkQ0bG-RY6ZDfeUqbb4GQ_CyoimGV2ZdSD66NWnfQAZUbBkJ5j4WHNqPR6KBQfx3xZMW4V9btZg_K5bex1rO3AMTbQpQvuMrmGN5zZHs6vaZMRZ3Na4MJEVKv-GswA-i_yArwW21DJ/s1600/DSC_4157.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiN2WSkQ0bG-RY6ZDfeUqbb4GQ_CyoimGV2ZdSD66NWnfQAZUbBkJ5j4WHNqPR6KBQfx3xZMW4V9btZg_K5bex1rO3AMTbQpQvuMrmGN5zZHs6vaZMRZ3Na4MJEVKv-GswA-i_yArwW21DJ/s320/DSC_4157.JPG" alt="" id="BLOGGER_PHOTO_ID_5631624400583771106" border="0" /></a><br /><div style="text-align: center;">Baptism of Esther Juliana - such a special day.<br /><br /></div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiDqP8xqIeX6wTKQOLuQxCtgu9hSSopilPH6KLUxJOWsKxo9zS04Ti27g8IlhGpX3gv6jFZ-jB3wdfs_VVLlo1E2fSssESopLSn_wVNX4Povf5WpdGGBZBBVoIHTjeel-EUcVYpVhUobhC/s1600/DSC_4227.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 213px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiDqP8xqIeX6wTKQOLuQxCtgu9hSSopilPH6KLUxJOWsKxo9zS04Ti27g8IlhGpX3gv6jFZ-jB3wdfs_VVLlo1E2fSssESopLSn_wVNX4Povf5WpdGGBZBBVoIHTjeel-EUcVYpVhUobhC/s320/DSC_4227.JPG" alt="" id="BLOGGER_PHOTO_ID_5631624399044924354" border="0" /></a><br /><div style="text-align: center;">Noah with his grandparents!<br /><br /></div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQhXBCC6421SCQKDK27V1765d8sSwOmr6_2rjgUVoqbrCCSAIXlR0kkJLq0uKjgFRLcIe9eNJLcxQ_lJdeErI_9lhC1Jem792VzWJP7I00et4aWHG_1R66bEmsZHFRC3DnExMsfdnNdUqT/s1600/DSC_4306.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQhXBCC6421SCQKDK27V1765d8sSwOmr6_2rjgUVoqbrCCSAIXlR0kkJLq0uKjgFRLcIe9eNJLcxQ_lJdeErI_9lhC1Jem792VzWJP7I00et4aWHG_1R66bEmsZHFRC3DnExMsfdnNdUqT/s320/DSC_4306.JPG" alt="" id="BLOGGER_PHOTO_ID_5631624395115308098" border="0" /></a><br /><div style="text-align: center;">One year with our g-tubie!<br /><br /></div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkY9q8N0tMLzGPz9Yri1J8N7H3GYP5Qse7piWf9E6LBjJfhl6iMpt9C-3hrjwmJ3msPc3W9xihF1j4KPqkEQMJZJIeh4HgGS2fCH2jeg98kCu8nkzW6u8gRhUJSwnnAx6FouZouYmfwYSQ/s1600/DSC_4258.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 213px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkY9q8N0tMLzGPz9Yri1J8N7H3GYP5Qse7piWf9E6LBjJfhl6iMpt9C-3hrjwmJ3msPc3W9xihF1j4KPqkEQMJZJIeh4HgGS2fCH2jeg98kCu8nkzW6u8gRhUJSwnnAx6FouZouYmfwYSQ/s320/DSC_4258.JPG" alt="" id="BLOGGER_PHOTO_ID_5631624390545642178" border="0" /></a><br /><div style="text-align: center;">Blending away every 2 days!<br /><br /></div><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidEKhKVDY1UvXFMtJHx_nLG5prI72u1u87e3BOmrMFMOv7Ki6799jmATJu4ArlVbDLnsHE2KDQlPiZyo8ogxGb3Xbo-AiMXO9ju3U_jhU0olGEFMQdMpe2dLp4BEE6mlEn2Fhjl-yTHr_w/s1600/DSC_4283.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 213px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidEKhKVDY1UvXFMtJHx_nLG5prI72u1u87e3BOmrMFMOv7Ki6799jmATJu4ArlVbDLnsHE2KDQlPiZyo8ogxGb3Xbo-AiMXO9ju3U_jhU0olGEFMQdMpe2dLp4BEE6mlEn2Fhjl-yTHr_w/s320/DSC_4283.JPG" alt="" id="BLOGGER_PHOTO_ID_5631621392791973042" border="0" /></a><br />Peak a boo little sister!<br /><br /></div><span style="font-weight: bold;">Hello again!<br /><br />We have entered a new realm at the Dykstra household: the two kid family. It is joyful, noisy, fun and mostly really busy! But since I've been sick the last couple days (pink eye and a cold), I thought I should spend my couch time being a little bit productive! So here is a brief update on Noah. I should say that Esther is doing very well. Her feeding was rocky and challenging but after a formula change (momma's instinct!) and a trial of Zantac (since stopped), she is starting to pick up and do well on the bottle. Praise God.<br /><br />Here's a little glimpse into life for Noah (and a big thank you for your continued interest, care, love and support in our journey of tube feeding).<br /><br />Noah did very well with tolerating feed until the end of June. Suddenly he was retching frequently and his behaving was riddled with crying, hitting and generally being upset. I still feel he was teething since as of this week, super happy Noah is back - horray! I love that side of Noah - easy-going, fun-loving and cheerful. The best part is that I see a real change in his retching. I counted maybe 5 yesterday! He is still having trouble napping and tends to wake up at the 30 minute mark retching but he is a good sport about it all so what can we do? We just go with it!<br /><br />I AM SOOOO HAPPY TO REPORT that we have been able to move Noah to 3 tube feeds a day! As of this past Sunday I have recalculated his recipes, added some extra high calorie ingredients and we are doing well on this new routine. What a change for our little guy. While the feeds are pretty "rich" I believe he is handling them very well! It just creates more normal routines for Noah and for our whole family. Now he spends at least 30 minutes less each day sitting and watching his DVDs. Again, this is a step we have taken without suggestion or without support. We've learned that if you want to go a different direction when tube feeding, you'll likely do it on your own. Thankfully Jared goes along with momma's instincts and I in turn with his. To that end, Jared has helped Noah wean off his Losec (proton pump inhibitor medication). We'll wait and see if Noah shows us any signs of complications being off the meds. He has taken Losec since he was 3 months old so it is a big change for him.<br /><br />At the same time, we've added in Singular to his daily routine. This is a pill used to treat asthma and it is being trialed for one month as the recommendation of our new pulmonary specialist. We really don't think Noah has any form of asthma but we need to give it a try. We crush it from pill form and add some water to flush it through his tube. The coughing that Noah does is still a ball of confusion for his Drs. and this is another effort to see how he responds. So far, nothing exciting to report....we'll see how it goes.<br /><br />Noah is learning many new animal sounds and his most used phrase is "what dis, dis, dis?" He also knows "hi" and "bye" but doesn't use any other words. He does however make a ton of sounds and babbles constantly. I love listening to him especially when he is outside in his beloved backyard. He has definitely made some progress, albeit slowly, in the last months.<br /><br />Mr. Noah has become an expert and pretty fast little scooter! He pulls himself up to stand and shuffle all the time but he is so used to scooting and has figured out it is a fine way to travel that we don't see him walking too quickly. At almost 20 months we just keep watching and waiting - one day he'll get going on his two feet. In the meanwhile, he is so cute to watch scooting around the house and backyard.<br /><br />Noah had a hearing test in June and the verdict is he is hearing in the normal range. Good enough for me but they want a follow up in 6 months. We'll see what we decide to do.<br /><br />We are "nanny-free" for almost 3 weeks - we sure miss Marleen but did enjoy a week with Grandma and Grandpa and things have transitioned well for me being a momma on my own during the day. Jared comes home ready to help out with feeding either kidlet so we have a good routine going.<br /><br />Thanks again for keeping up with our family.<br /><br /></span>Dykstrashttp://www.blogger.com/profile/00490149516314290697noreply@blogger.com0tag:blogger.com,1999:blog-2984735112774498751.post-32819131805557048862011-05-18T13:42:00.007-06:002011-05-18T14:00:34.903-06:00Our newest addition<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3BZFrddpKSOccUc1BlCsgcbZWFP5K2-qjOrxmluwSPxf0kPC4XbCvc20Q0lyWqn_EakkBTxfDO3CtxnKDV3IeBVMcDL2OlrzV__3fx-gXy19kZsuUbfber8Sz3Fj7sF4cBfleO9Qhyphenhyphend9I/s1600/DSC_4008.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 213px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3BZFrddpKSOccUc1BlCsgcbZWFP5K2-qjOrxmluwSPxf0kPC4XbCvc20Q0lyWqn_EakkBTxfDO3CtxnKDV3IeBVMcDL2OlrzV__3fx-gXy19kZsuUbfber8Sz3Fj7sF4cBfleO9Qhyphenhyphend9I/s320/DSC_4008.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5608148161766929458" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggUz0TYE4DNox1KiuW9GcWA19-fhlq9yy-PUThpJxxFFeOxoiRyDF6dsgyp-kPMStkmmh7qUkdQ-MCjjp5nO7z6DU8DExWyELzIMakPMq1Abu5YY6wiZFZF4fAsaU7f8ggTlArSisGxOjx/s1600/DSC_4045.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggUz0TYE4DNox1KiuW9GcWA19-fhlq9yy-PUThpJxxFFeOxoiRyDF6dsgyp-kPMStkmmh7qUkdQ-MCjjp5nO7z6DU8DExWyELzIMakPMq1Abu5YY6wiZFZF4fAsaU7f8ggTlArSisGxOjx/s320/DSC_4045.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5608148155256262722" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMp3ljBt5Ho1aiCgNAb1swHcAtDogvyPyk2vNAskxHPe8RGkpWPAqFC66_WCEpcuCewZy2Kmvl5tWVU_qucKjr2o4zDWlKnxXpMk6Tj2SON4XhzOkginucVmD5y61WeOblIsLBFLZUYfOZ/s1600/DSC_4060.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMp3ljBt5Ho1aiCgNAb1swHcAtDogvyPyk2vNAskxHPe8RGkpWPAqFC66_WCEpcuCewZy2Kmvl5tWVU_qucKjr2o4zDWlKnxXpMk6Tj2SON4XhzOkginucVmD5y61WeOblIsLBFLZUYfOZ/s320/DSC_4060.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5608148152095784546" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGxl1xSjj1IPCd46RP1wGDRGdOkUL_ymhyphenhyphenEpn9bZ5mNlBhqDMLxxD4vpy0zOv3BodlMhEao71Syi6TOcWq42K0qyxBj7lXw4GkWoDf4IQW5DKSYuvsCSC-F0td6VxiZxFTh900gnOz8S-D/s1600/DSC_4066.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 213px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGxl1xSjj1IPCd46RP1wGDRGdOkUL_ymhyphenhyphenEpn9bZ5mNlBhqDMLxxD4vpy0zOv3BodlMhEao71Syi6TOcWq42K0qyxBj7lXw4GkWoDf4IQW5DKSYuvsCSC-F0td6VxiZxFTh900gnOz8S-D/s320/DSC_4066.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5608148140300215554" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgt6KoXxP7jUaUFyK83e2YtGJ2lPCfN5DD2v383hc5Svxv_88pwoBeQAN30x5gXyK4Oa0avXvSb04XGrx9ke9UmusTB6GjPlUJ3dbmMaHh0vTCd_jEqT8PwkDwuLGWDDc3NtS2hT4q0bPKG/s1600/DSC_4069.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgt6KoXxP7jUaUFyK83e2YtGJ2lPCfN5DD2v383hc5Svxv_88pwoBeQAN30x5gXyK4Oa0avXvSb04XGrx9ke9UmusTB6GjPlUJ3dbmMaHh0vTCd_jEqT8PwkDwuLGWDDc3NtS2hT4q0bPKG/s320/DSC_4069.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5608148135371520914" /></a><br /><span style="font-weight:bold;">Hello!<br /><br />Thank you for all the congratulations on the arrival of our daughter, Esther Juliana, born on May 6, 2011. Here are a few more pictures to document her first week of life in our family.<br /><br />Noah has adjusted beautifully and is enjoying all the different people caring for him. He continues to take his blended food feeds well, with his retching being well managed. I'm so proud of how well he has done amidst the changes around him. He thinks his sister is a pretty fun addition to the household and isn't too put off that I cannot lift him or really do much care for him. He is in very good hands with daddy in the morning and evening and then a group of special women who are helping us in the 6 week recovery period. <br /><br />Our planned c-section went better than I could have imagined. God has been so gracious in my recovery process. I feel better than I did months after Noah's birth and am able to manage a newborn and the household with lots of support. We are learning to readily accept help, knowing in time we will be more able to bless others.<br /><br />Esther is a joyful addition to our household and the extended family. Esther means "star" and comes from a character in the Christian Bible, a woman of great character and strength. Esther's middle name is the same as her Oma's (my mom) and is also a version of my sister's name. Both are very important women in our lives and in our journey with parenting. <br /><br />I'm going to take a little break from blogging to focus on parenting, rest and recovery. Noah is stable in his feeding, we aren't looking to add or change anything to his therapies right now and we are just enjoying a season of raising our young children. Things are going well with Esther, she is a healthy little girl and we are learning her routines. <br /><br />We are incredibly blessed. Blessings to each of you.</span>Dykstrashttp://www.blogger.com/profile/00490149516314290697noreply@blogger.com2tag:blogger.com,1999:blog-2984735112774498751.post-16337119089285600752011-05-07T00:55:00.013-06:002011-05-08T08:04:55.400-06:00<div style="text-align: center;"><span style="color: rgb(255, 102, 102);font-family:georgia;font-size:180%;" >Esther Juliana Dykstra</span><br /></div><div style="text-align: center;"><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSR8gdgpEd0gmA7asOJX7aan_y8ee23UCluo-yWx2dxV1KBvB-tPRkXpiQ9JJj2_nW6lNgeN9lt0aoMozAqN3qyz7Cl61eLf8PZtEP6cU6sO4NcRIQhrFziVIhHl4yzzp7uoJ_EDlAKcne/s1600/DSC_4001.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 539px; height: 358px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSR8gdgpEd0gmA7asOJX7aan_y8ee23UCluo-yWx2dxV1KBvB-tPRkXpiQ9JJj2_nW6lNgeN9lt0aoMozAqN3qyz7Cl61eLf8PZtEP6cU6sO4NcRIQhrFziVIhHl4yzzp7uoJ_EDlAKcne/s320/DSC_4001.JPG" alt="" id="BLOGGER_PHOTO_ID_5603865162169287362" border="0" /></a><br /></div><div style="text-align: center; color: rgb(255, 102, 102);">Born 6:30pm, May 6, 2011<br /><br />8lbs, 4 oz & 21"<br /><br /><br />Esther and Darlene are doing well.<br /></div><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWtdHVKGewXkU0TXSl18CBhUt2m6edNR2jWNgboHT8JAfO5f0UrthWXyuneoCEcfRamj7I4CgPVsIQ9-cmU2tgVLOOi63RiJ3JwRUS7a_IC9Bjw1_kkh_B7HoFeTree5VOwt4JVnKm29fA/s1600/2011-05-06_20-22-28_882_Calgary.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 180px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWtdHVKGewXkU0TXSl18CBhUt2m6edNR2jWNgboHT8JAfO5f0UrthWXyuneoCEcfRamj7I4CgPVsIQ9-cmU2tgVLOOi63RiJ3JwRUS7a_IC9Bjw1_kkh_B7HoFeTree5VOwt4JVnKm29fA/s320/2011-05-06_20-22-28_882_Calgary.jpg" alt="" id="BLOGGER_PHOTO_ID_5603868106969747474" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJH6MuAmhKj7r4FB77rmoXXlq96sMCJcOwTvYr1ffY-EUjVqn4J-VxOruMPHTvQ2CIJrZwHogHkE8PoNb67iHFYxJVhUJEpoCIzMLa_DIp2eSJuH5K_MzVBzS5yLv81J0JHlMoJwv_5BNQ/s1600/DSC_3994.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJH6MuAmhKj7r4FB77rmoXXlq96sMCJcOwTvYr1ffY-EUjVqn4J-VxOruMPHTvQ2CIJrZwHogHkE8PoNb67iHFYxJVhUJEpoCIzMLa_DIp2eSJuH5K_MzVBzS5yLv81J0JHlMoJwv_5BNQ/s320/DSC_3994.JPG" alt="" id="BLOGGER_PHOTO_ID_5603867462630016786" border="0" /></a>Dykstrashttp://www.blogger.com/profile/00490149516314290697noreply@blogger.com3tag:blogger.com,1999:blog-2984735112774498751.post-25790630865189214802011-04-21T12:29:00.026-06:002011-04-21T15:50:05.491-06:00Regrouping<span style="font-size:130%;"><span style="font-weight: bold; color: rgb(102, 0, 204); font-family: georgia;">So the big anticipation of the month was Noah's tube change. To recap, about a month ago we noticed a tiny hole in Noah's PEG tube. We continued to feed him as normal and found that the leak only occurred when the tube was kinked. I called the g-tube clinic and was told to book Noah in for a tube change with the surgeon. Done and done.</span><br /><br /><span style="font-weight: bold; color: rgb(102, 0, 204); font-family: georgia;">We arrived on Wednesday morning ready to have the change done. I hadn't slept in 4 nights, both due to pregnancy and the worry about the fact that I had been told time and time that Noah wouldn't be given any sedation. I wish I didn't worry. I prayed through my worry. I asked God to give me peace and wisdom in my hesitations about the change. But I'm human and sinful and I couldn't settle down. </span><br /><br /><span style="font-weight: bold; color: rgb(102, 0, 204); font-family: georgia;">We met a different nurse for training. We started talking about Noah's tube, the leak, the fact that we are doing blenderized. We often feel very defensive at clinic and this time was no exception. Immediately they got all concerned about blenderized and asked what kind of blender we had and how we had come up with the recipes and who was monitoring the situation. Sigh. I confidently said we were using a Vitamix and all the recipes were checked by the dietitians from Infant Services. We went over the challenges of using a mickey skin level device with blenderized. I'd love to hear from parents out there about any challenges they have faced with BD diet and the tube - ie. plugging. I'm thinking the occurrences are few and far between. </span><br /><br /><span style="font-weight: bold; color: rgb(102, 0, 204); font-family: georgia;">Anyways (please excuse my thoughts, my pregnancy brain is in full-force and I seem to be all over the place!!), we move beyond the feeding to the removal of the PEG. She told us it would be safer to pull the PEG out rather than cut it off at the stomach and let it pass. I was TERRIFIED. This is exactly what I was afraid of. I asked once again about sedation. HALLELUJAH. She said we could absolutely have Noah sedated, just not today. It had to be booked in day surgery about a month ahead. </span><br /><br /><span style="font-weight: bold; color: rgb(102, 0, 204); font-family: georgia;">This is both wonderful and absolutely frustrating at the same time. I have been asking the g clinic for months if Noah could be sedated when the time came to change his PEG. No, no, no was the answer. I was told it wasn't necessary. So, now the possibility was on the table and I didn't want to do the change without the sedation. I've met parents online whose kids have had major challenges after a tube change at a later age, in fact even some had post traumatic stress disorder. Noah already has major "white coat" syndrome, meaning he can't stand Drs. or Dr. offices. He freaks out and screams anytime he is examined, even if its as simple as listening to his lungs. I always have to pin him down at appointments.</span><br /><br /><span style="font-weight: bold; color: rgb(102, 0, 204); font-family: georgia;">So the frustration? Why was this person saying yes? I told her that I had asked before. She said she probably shouldn't have said anything about it. WHAT?? We are the parents of a tube fed kid. We should be given ALL our options for care and treatment for each and every procedure. I shouldn't have to access most of my information from strangers I meet on line (whom I deeply respect and appreciate but you know what I mean). So often I have felt like a small child when I inquire about equipment etc. and the responses I receive. Now, this is all in the past, I'm not upset, I'm not going to dwell on it. I just hope for other new parents who are tube feeding that they would not feel as frustrated as we have. My advice - find other tube feeding families to talk with and gain wisdom and insight from their experiences!</span><br /><br /><span style="font-weight: bold; color: rgb(102, 0, 204); font-family: georgia;">Anyways, she asks to see the tube. She acknowledges how small the leak is. She talks to Dr. Wong. We talk to Dr. Wong. He looks at my expanding belly (countdown is on to baby!) and we all decide to wait. Wait until sedation can be booked and continue to use the still-functioning tube until maybe August or September. Relief. Rejoice. Regroup.</span><br /><br /><span style="font-weight: bold; color: rgb(102, 0, 204); font-family: georgia;">This week to come is full of appointments once again. I need to have an ultrasound on Tuesday just to check the size of baby. Position makes no difference of course because of our planned c-section. I'm measuring a bit large (I feel a bit large!) I doubt it will change our date for surgery. Noah has PT and Speech this week. He has been given a speech assessment recently and he is certainly below average in his basic speech. We know he understands so much but his only word is "bye bye" and he used to say "mama" and "dada" but not anymore. They will soon check his hearing, not that any of us are worried, but you know how the medical system works and we appreciate them covering off all the bases for Noah. We just keep working on encouraging his babbling!</span><br /><br /><span style="font-weight: bold; color: rgb(102, 0, 204); font-family: georgia;">As for PT, Noah continues to try and stand and he has shuffled a bit around the coffee table. We keep many of his toys up on tables, couches, ledges to encourage him to stand up. Noah isn't motivated by many things so again we wait for Noah to make his move and try to encourage him as much as possible. He is less afraid of being on his feed which is a relief. He still gets very frustrated easily and will hit himself or hit his head against the floor or furniture. We aren't sure why he does this but have chatted with our Ped. about it and we are just seeing how this behavior proceeds with time. He still has lots of smiles and laughs every day, except on feed! Food and Noah are just not a happy mix :-)<br /><br />Blending food is going well and while still full of figuring, calculating, watching Noah's tolerance and finding the right foods to use, it is working fine. I'm blessed to have great resources like Allie's mom Jodi who like me found it hard to find exact recipes online and she readily shared her recipes with me. I hope I can be a resource to others in the future. Thank you, Jodi! </span><br /><br /><span style="font-weight: bold; color: rgb(102, 0, 204); font-family: georgia;">I think this will be my last blog until baby #2 appears on the scene. Jared will post some pictures and an update for your fine folks when the time comes and I'll stop typing as the carpel continues to worsen. I remember it getting better when Noah was a month old so I'm hoping it will be behind me in a few months! The nausea and vomiting disappeared right after birth with Noah so here's hoping for a similar outcome! We are very excited to meet our little one.<br /><br />Easter blessings to each of you.<br /></span></span>Dykstrashttp://www.blogger.com/profile/00490149516314290697noreply@blogger.com0tag:blogger.com,1999:blog-2984735112774498751.post-17318458335801860932011-04-05T11:02:00.031-06:002011-04-14T20:01:26.589-06:00Blenderized Diet Update<div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiG63eyfSjWmJZqEGV_pRdO-hRWyS2mWSOEWZ5B5eFnCYUd3pFEuXXrwLC-ukkGTFkth_fnXVYV8lne-Wtk2TTvATDcETPXUhRj9Z15E6ADFkOpiqeKUE3UQbGJWy39ziDex46Q07nV4g48/s1600/DSC_3954.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiG63eyfSjWmJZqEGV_pRdO-hRWyS2mWSOEWZ5B5eFnCYUd3pFEuXXrwLC-ukkGTFkth_fnXVYV8lne-Wtk2TTvATDcETPXUhRj9Z15E6ADFkOpiqeKUE3UQbGJWy39ziDex46Q07nV4g48/s320/DSC_3954.JPG" alt="" id="BLOGGER_PHOTO_ID_5595617204260601570" border="0" /></a><br /><span style="font-weight: bold;">Tupperware kitchen party - couldn't get him to smile with his eyes open!<br /><br /></span></div><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgq31r57nMl86kygw0xF7jCMWkMQ93SkQKMYE3-FeRIuVkKXL8LP23PU-SV9hml5GfBVAUptLQobPDvxg6Z1kySJvfRLtshmHRC1eoYN3ScQuyHX1xujO9MFd-sVINvxDdIiMRDqUfJHu_w/s1600/DSC_3949.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgq31r57nMl86kygw0xF7jCMWkMQ93SkQKMYE3-FeRIuVkKXL8LP23PU-SV9hml5GfBVAUptLQobPDvxg6Z1kySJvfRLtshmHRC1eoYN3ScQuyHX1xujO9MFd-sVINvxDdIiMRDqUfJHu_w/s320/DSC_3949.JPG" alt="" id="BLOGGER_PHOTO_ID_5595617201457408882" border="0" /></a><br /><span style="font-weight: bold;">Enjoying the spoiling from Uncle Rob who loved shopping for Noah in Disneyland!</span><br /><br /></div><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjC-KruVSXCZbQiVm82FE0AfW3dG0NzHJRmOMz4ekbQ3scMgx-LXuDY22NdHokKoR81uk09wSr0EnCkwuUFIE1c8SsZTPXXSvcKhgfhAjWobHNPXdesFu7LmJLAnKpMcTH7Z1c3nrNcj44t/s1600/DSC_3947.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjC-KruVSXCZbQiVm82FE0AfW3dG0NzHJRmOMz4ekbQ3scMgx-LXuDY22NdHokKoR81uk09wSr0EnCkwuUFIE1c8SsZTPXXSvcKhgfhAjWobHNPXdesFu7LmJLAnKpMcTH7Z1c3nrNcj44t/s320/DSC_3947.JPG" alt="" id="BLOGGER_PHOTO_ID_5595617192694244050" border="0" /></a><br /><span style="font-weight: bold;">Hanging out with the "big" cousins</span><br /><br /></div><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjK4sdampsGRZQvIO1K1Kf8eko9kGsC7Y9ww6IwyXCIm14jJNdJVly3537DNxoBT_oKM9QFcSo6Ap2e3pvA5PihoV7tIKxZXGoChqpeUPVSMzKYJ9P7SM5cltqoV3XSBSCdmMhuOEgzLhg/s1600/DSC_3945.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjK4sdampsGRZQvIO1K1Kf8eko9kGsC7Y9ww6IwyXCIm14jJNdJVly3537DNxoBT_oKM9QFcSo6Ap2e3pvA5PihoV7tIKxZXGoChqpeUPVSMzKYJ9P7SM5cltqoV3XSBSCdmMhuOEgzLhg/s320/DSC_3945.JPG" alt="" id="BLOGGER_PHOTO_ID_5595617186007040866" border="0" /></a><br /><span style="font-weight: bold;">One of our first blends....they have gotten "better" and now include fresh, whole food ingredients. I'm really happy about that and hope to be able to blend only whole foods (in terms of fruit and veggies)</span><br /></div><br /><br />We are doing well in Noah's journey of "eating" real food. It is well worth the effort and I hope that we'll see the scale show good results next time we have a weight check.<br /><br />We truly believe that Noah is doing well on this diet. He has slept through the night, has had no more daily "blowout" diapers,. Noah retches at least once around each feed, plus his usual morning retches (2-3 in the hour after waking) so that remains consistent. That is okay with us because it confirms our feeling that Noah is volume intolerant. He retched on Good Start formula, Neocate, Pediasure and now on "real" food. He retches on water. It is hard to believe he has a cow's milk/soy allergy or intolerance based on our continuing journey with tube feeding. Perhaps he is lessening his retches with age? It is hard to know and probably not worth spending time trying to figure out. We are happy to be feeding our little tubie this daily mix of "real" food and have ensured (well, Jared has) that we have all the supplies to make the blending as easy as possible. <br /><br />What do we blend? Well, I have to admit to breaking a few "rules" and not spending a few days in between introducing new foods to see if Noah has any allergies. We justify our actions by the simple foods we are using and also the fact that Noah did eat some solids between the ages of 3-6 months and never showed any intolerance. As our Pediatrician reminded us, "how many kids are allergic to carrots?" So we are being conservative with our ingredients and watching Noah's skin, bowels and retching to monitor his reactions. So far, so good.<br /><br />Here are the basic ingredients we use in Noah's blends. They do vary from day to day a little based on his calories/fat/protein/fiber/carbs/vitamins. Basically, he has a veggie, fruit, grain, protein and a fat daily. I use "sparkpeople.com" to calculate his daily intake and it is easy to print off each day to discuss with Noah's RD and Ped.<br /><br />My main goal is finding high calorie/higher fat foods so we can boost his overall calories without having more volume. Noah can take 6 ounces perfectly but starts to look a little weary when I get to 8oz. However, 4 feeds in a day is enough for everyone so I'm pushing him to the 8oz per feed so that we can at least have quality nap time/play time in the day. I'm not willing to do many feeds out of the house right now (partly due to pregnancy but also Noah's need for a quiet environment during feeds) so we are real homebodies, but Noah doesn't seem to mind!<br /><br />Here are some examples of what we've blended so far:<br />Applesauce (sweetened high-calorie type but I'm planning to start using a whole apple soon)<br />Pear puree<br />Mango/pear puree<br />Prune puree (just a few teaspoons)<br />Cooked, enriched macaroni (I initially used this but have left it behind for higher nutrient grain options)<br />Cooked lentils and beans<br />Hard-boiled eggs<br />Cooked chicken breast (you should see the Vitamix at work - awesome!!)<br />Avocado (this is my favourite "power" food)<br />Brown Rice Infant Cereal (thank you Amanda for the tip on infant cereal)<br />Whole Goat's Milk (I have only been able to find this at Safeway or health food stores but I'm so happy to have it in our quest to keep things cow's milk/soy free for now)<br />Organic Baby Oatmeal Cereal (cow's milk/soy free!)<br />Orange veggie puree (carrot, sweet potato or squash - planning to start use baby carrots etc.)<br />Green veggie puree (peas or beans, I just bought a bag of frozen beans to start trying those)<br />Olive Oil (good quality extra virgin but will try Omega, flax and coconut oil too in the future)<br />Dose of liquid multivitamin (Wampole's brand)<br />Drop of Vitamin D daily<br /><br />Other medical info: <br /><br />Sweat Chloride - was<span style="color: rgb(255, 102, 0);"> <span style="font-weight: bold;">NEGATIVE</span></span>. We are so grateful that Cystic Fibrosis is off the list of possible diagnoses for Noah! <br /><br />Tube change - should take place next week. I'll let you know how it goes!<br /><br />Have a great week, everyone!Dykstrashttp://www.blogger.com/profile/00490149516314290697noreply@blogger.com2tag:blogger.com,1999:blog-2984735112774498751.post-25135542949807646452011-03-22T19:55:00.030-06:002011-03-30T19:52:41.885-06:00News<div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxxzJvZAuCqnByQgLumo-y3B6exhWzxCXPSlTmXE8qVo-QG3kbeTYw5rzkLcNRpiag5xwy4JpoC4aSgKdR5WcLnZUpXRp8kQHgHUV29kzqVZl1FFO7NFLXv5AqnUoTlDhyncUjzE6rsBXc/s1600/DSC_3925.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxxzJvZAuCqnByQgLumo-y3B6exhWzxCXPSlTmXE8qVo-QG3kbeTYw5rzkLcNRpiag5xwy4JpoC4aSgKdR5WcLnZUpXRp8kQHgHUV29kzqVZl1FFO7NFLXv5AqnUoTlDhyncUjzE6rsBXc/s320/DSC_3925.JPG" alt="" id="BLOGGER_PHOTO_ID_5587089114117854130" border="0" /></a><br />"I like it here, mama!"<br /></div><br /><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOOi1bv1v9jr0UsbFZRCSciiXMdBQBF8J56-66I82RYOhhfnF_nyX8jHOJPieOIN2P4GooDtqqowmhSEglH_7PeOj_q4UxZHByKXrf_OrDiQ3zXUEkuNhxaOLLlbw_kXVTqlIvGejdcH96/s1600/DSC_3936.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOOi1bv1v9jr0UsbFZRCSciiXMdBQBF8J56-66I82RYOhhfnF_nyX8jHOJPieOIN2P4GooDtqqowmhSEglH_7PeOj_q4UxZHByKXrf_OrDiQ3zXUEkuNhxaOLLlbw_kXVTqlIvGejdcH96/s320/DSC_3936.JPG" alt="" id="BLOGGER_PHOTO_ID_5589316599663028898" border="0" /></a>Ahhhh, a great kitchen!<br /></div><br /><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZikn4MAdgugS4Ih8DnDFXoPz8cb8stBFOBkhASMzA_LTnjmUN3UmGDB3suVHJzdhrTG06r-Asy6DcNf_POREHneSCzqjVUlLRRcbC822NVrRVf2iaACzqPrlazeW11QlQyGJ9lTDMgqM7/s1600/DSC_3924.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 213px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZikn4MAdgugS4Ih8DnDFXoPz8cb8stBFOBkhASMzA_LTnjmUN3UmGDB3suVHJzdhrTG06r-Asy6DcNf_POREHneSCzqjVUlLRRcbC822NVrRVf2iaACzqPrlazeW11QlQyGJ9lTDMgqM7/s320/DSC_3924.JPG" alt="" id="BLOGGER_PHOTO_ID_5589316591959107250" border="0" /></a><br />Trusty, super helpful Grandma on duty (Grandpa was also amazing!)<br /><br /><br /></div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4EPeOB064e5yKtImmdhPtoR2Ff1VVjTZFYEoG_SrnpK6zyL2LqXnqlzcKifvqnwmH5HcvcYTJWpsx94zg4KFhGiigv3cj8f4w7KkoMchtS11bwqWqREgofGfk8CkDFlRk-w-O7HyOqE5F/s1600/DSC_3932.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4EPeOB064e5yKtImmdhPtoR2Ff1VVjTZFYEoG_SrnpK6zyL2LqXnqlzcKifvqnwmH5HcvcYTJWpsx94zg4KFhGiigv3cj8f4w7KkoMchtS11bwqWqREgofGfk8CkDFlRk-w-O7HyOqE5F/s320/DSC_3932.JPG" alt="" id="BLOGGER_PHOTO_ID_5589316586564863362" border="0" /></a><br /><div style="text-align: center;">Home sweet home<br /><br /><br /><div style="text-align: left;"><span style="font-weight: bold;">Moving news: </span><br /><br />Well thanks to A LOT of help, we have settled into our new home. I was a reluctant mover, only in that I didn't think I could handle the work, but am overjoyed at our new home and the benefits it offers our family. Thank you for all the help, offers of help, prayers and encouragement. Thank you especially to Grandma, Grandpa, Oma and Auntie Julie-Ann who made the whole process manageable with their care and hard work. <br /><br />Noah did beautifully in the transition process and handled everything like a champ. He is enjoying his version of stair climbing, which consists of us helping up while he "walks" his feet on the stairs. In his true style, he isn't bearing any weight on his legs when he does this. Smiles. Noah has started standing up in the crib which is a great development for him. <br /><br />We are settled and the coffee pot is ready if you want to come by and take a peek.<br /><br /><span style="font-weight: bold;">Neurology news:</span><br /><br />Last week I thought Dr. Sarnat would discharge Noah from neurology; however, he would like to complete one final MRI of Noah's brain to ensure nothing has been missed. We aren't opposed to this but of course it comes with general anesthesia as Noah will need to be still for 1o minutes. It is a "light dose" so hopefully it won't be a big deal for him. It will take approximately 2-3 months to get this appointment so it isn't something we have to think about in the immediate. <br /><br />The other interesting news is that Noah will definitely remain hypotonic (low muscle tone) for his lifetime. It isn't too big of a deal - he'll need to avoid contact sports and will be prone to dislocation of joints. Good thing he is more of a book/music/tv kind of guy. This is really one of the only "symptoms" Noah has ever been diagnosed with. There are diseases/disorders associated with hypotonia that show feeding challenges.....but after spending time reading through all the possible conditions, nothing really seems to fit Noah. <br /> <br /><span style="font-weight: bold;">G-tube news:</span><br /><br />Noah will need to go to a skin level button in the next few weeks. There is a pin-hole sized leak in Noah's PEG and according to the G-tube clinic, that means Dr. Wong will change it out to a Mic-key button. We had tried to do this change back in November, but did not do it at that time due to Noah's retching. We had just decided not to pursue changing the tube until something happened, and well, "it" happened. The earliest I could get Noah in to see the surgeon (who removes the PEG) is April 20. The nice part about the mic-key is that we'll be able to do our own changes, approximately every 6-8 months. Our prayer is that Noah will not be too anxious at clinic that day and though I know based on experience he will be very upset, I hope it will be over quickly. <br /><br /><span style="font-weight: bold;">Sweat Chloride Testing news:</span><br /><br />Noah is being screened for Cystic Fibrosis on April 6. The test is at least 30 minutes and I'm not looking forward to keeping sweat bands and electrodes attached to Noah for that duration. I'll bring along the trusty DVD player and pray for the best as I'll be on my own with Noah.<br /><br /><span style="font-weight: bold;">Blended Diet news:</span><br /><br />This step in changing Noah's diet has taken much longer than I thought. We have our Vitamix, but I'm having a hard time reaching the dietitian. I know that the recipes I've worked up will meeting Noah's needs, I've calculated his water requirements and have purchased the basics to get started. We are starting simple, with already pureed baby foods, and avoiding milk and soy products for now. I haven't been able to find a truly milk free infant cereal so if you know of a brand, please let me know. For now, I'm using enriched, cooked macaroni as a base grain, and will give quinoa and brown rice a try down the road. <br /><br />So despite not talking to the dietitian, we are starting tomorrow and give it our first try. We are both really nervous, mostly due to the potential of plugging the tube. But sometimes after a retch, Noah brings up some pretty thick stuff, so I'm hoping blenderized won't be any tougher to get done (how's that for a nice image?)<br /><br />Our recipe for tomorrow is quite simple. We will still give him 2 feeds of pediasure while he transitions. In the other 2 feeds, he'll "eat" cooked macaroni, applesauce, peas, carrots, rice milk, pureed chicken, olive oil and a dose of liquid multivitamin.<br /><br />I'll let you know next post how it is going. <br /><br /><span style="font-weight: bold;">Baby Dykstra #2 news:</span><br /><br /></div></div>We've been scheduled for a planned c-section on May 10. It is peaceful to know the date and be getting prepared. The baby's room is set up and most importantly, many prayers are being lifted that our 2nd experience as parents would begin with a more "typical" start. Baby is healthy, and mommy just tries to take it one day at a time as sleep is minimal. I'm still nauseous through the day and night and it is draining. But pregnancy is almost over :-) And then we'll be a family of 4. We are ready, eager and excited.Dykstrashttp://www.blogger.com/profile/00490149516314290697noreply@blogger.com3tag:blogger.com,1999:blog-2984735112774498751.post-65265565754606671572011-03-13T19:42:00.024-06:002011-03-13T20:47:33.695-06:00Whew!<div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjT3GzYsm1ZMTa9obFmVd3tktY0Wsg4w6-kG-f9M07RnRMBh-aAxiE4r9_3fgoG2kD_ZPccUpqxR03PLGbul218MGLEmhDFgkTCwqdWm3qySpCw9RdgvtdmlyVh-Hwf_3wzy9xh5wX9mN1J/s1600/DSC_3921.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 213px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjT3GzYsm1ZMTa9obFmVd3tktY0Wsg4w6-kG-f9M07RnRMBh-aAxiE4r9_3fgoG2kD_ZPccUpqxR03PLGbul218MGLEmhDFgkTCwqdWm3qySpCw9RdgvtdmlyVh-Hwf_3wzy9xh5wX9mN1J/s320/DSC_3921.JPG" alt="" id="BLOGGER_PHOTO_ID_5583757498003569810" border="0" /></a><br />Enjoying the moving process (wearing my sweater from Uncle Nathan!)<br /></div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPB2KFAHvaJTwS239CNDzghyphenhyphenTsXmrRSA-J85BQ4BNyM0QpaRnsLGyBHP-E9AdfutLV_8bdh-g8HUPTXOg3QfiQBCJwfh7jTI8C_DAtY3oQfemWW9eniGOCodOCb4hQX2pUFp3xINVFoz0N/s1600/DSC_3920.JPG"><br /></a><br /><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhX1t_XuS56XLi2XnTKwxGzf7dLwkNipmSXWvp8bMdg1hz1m-ZWY76BK3T4z3uG37Gn893RsFWFdjzK-TwLvrUdLmTNZVL5-DLkab1QTEC2QJOJCgFgfJ-5ugmzrf7X1dyqi72RUN4GkrPo/s1600/DSC_3917.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 213px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhX1t_XuS56XLi2XnTKwxGzf7dLwkNipmSXWvp8bMdg1hz1m-ZWY76BK3T4z3uG37Gn893RsFWFdjzK-TwLvrUdLmTNZVL5-DLkab1QTEC2QJOJCgFgfJ-5ugmzrf7X1dyqi72RUN4GkrPo/s320/DSC_3917.JPG" alt="" id="BLOGGER_PHOTO_ID_5583757486763912866" border="0" /></a><br />Auntie, is there anything you can't do?<br />Noah being a very good boy for a haircut by Julie-Ann (it was just too cold and Noah too sick to venture out to Mrs. Deenie's this month for our cut).<br /><br /></div><div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPB2KFAHvaJTwS239CNDzghyphenhyphenTsXmrRSA-J85BQ4BNyM0QpaRnsLGyBHP-E9AdfutLV_8bdh-g8HUPTXOg3QfiQBCJwfh7jTI8C_DAtY3oQfemWW9eniGOCodOCb4hQX2pUFp3xINVFoz0N/s1600/DSC_3920.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 213px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPB2KFAHvaJTwS239CNDzghyphenhyphenTsXmrRSA-J85BQ4BNyM0QpaRnsLGyBHP-E9AdfutLV_8bdh-g8HUPTXOg3QfiQBCJwfh7jTI8C_DAtY3oQfemWW9eniGOCodOCb4hQX2pUFp3xINVFoz0N/s320/DSC_3920.JPG" alt="" id="BLOGGER_PHOTO_ID_5583757495605819474" border="0" /></a>The new do!<br /><br /></div>In my last blog, things had improved with Noah. Not more than 2 days after that entry, Noah got what appeared to be another stomach bug. It was complicated by some teething which may explain the constant diarrhea but doesn't necessarily explain his inability to take feed. Retch, retch, retch. We were well worn out by the end of the week.<br /><br />He was a miserable little bear, screaming day and night, had some very difficult behaviour, and would barely sleep. We were concerned about the intensity of his retching and constant diarrhea that we took him off Pediasure for 24 hours and gave him electrolytes only. The strange thing was, he right away stopped retching! That day was really neat for Noah and I. He played so well, I was able to do much more around the house compared to a typical day. He took the electrolytes so quickly.<br /><br />The next day, I started Noah back on formula, about half his normal volume, and decided to use the plunger to quicken the feeds. He did well and it gave me confidence to continue to feed him quickly since. That is saving us a lot of emotional energy and time in general when we come to a feed. His bowels settled down and for the last 6 nights, he slept through the night (that's a total first for us!), had some decent naps and hasn't woken up coughing. Now, we recognize that he may easily start having difficulties during feeds and sleep, but we certainly have enjoyed the reprieve.<br /><br />It was during that period that we had a meeting with Dr. Palmer, Noah's Pediatrician. His thoughts were to return Noah to Neocate, double his Losec meds., refer Noah back to GI clinic, refer Noah to a pulmonary team and complete a sweat chloride test (to rule out Cystic Fibrosis). <br /><br />We totally disagree with our Dr. on returning to feeding Noah Neocate. Noah retched and retched often on Neocate. We tried it for 8 months, both on 24 hour feeds and bolus. So, we decided to start our journey with blending our own food for Noah. The challenge is appeasing the Dr. and dietitian by showing the nutritional information Noah will receive through his blendarized diet. The frustration is that a typical 16 month old diet would not be calculated so precisely. They would eat 3 meals and snacks each day. In any event, I've put together several basic recipes that meet Noah's current caloric daily intake. My goal is to not get too nutty about all the numbers and just remember that Noah will be getting real food each and every day, and hope and pray it will be something he tolerates well. I'm expecting to receive our Vitamix blender this week and while expensive, it comes highly recommended by lots of tubie parents. We don't want to clog or plug Noah's g-tube so we need a very smooth blend.<br /><br />As for doubling his meds, we are also opting to leave his dose alone for now. We aren't convinced he even needs the Losec, but it is standard to be on it for at least a year after a fundo. We'll continue to give him one daily dose.<br /><br />Going back to GI clinic probably won't result in any testing for Noah. The last time we attended clinic was in October and at that point they said they couldn't help Noah further. We'll go back and see if they have anything to add to our plan right now.<br /><br />The final 2 thoughts of the Dr. (pulmonary and sweat chloride) have to do with Noah's coughing. We still have a gut feeling that his coughing is gastric in nature and is related to feeding tolerance. However, since we have ruled out asthma it is the next logical step to engage a pulmonary specialist to investigate further. Same goes for the sweat chloride test. Noah was tested for CF as an infant but this is a more comprehensive test. April 6 is the date of the test and I'm nervous because Noah is not a willing participant when it comes to Dr. visits and tests. I hope he'll be okay.<br /><br />The journey continues, the questions continue, the search for a diagnosis continues. We have hope that Noah will continue to take feed quickly and tolerate them well. Clearly, he is a very sensitive little guy as the last weeks have shown us. He seems to pick up stomach related things very easily though doesn't have a lot of colds (a relief). We keep working as a team to support Noah's needs. I can't sing Jared's praises enough, he is an incredible father and husband. I am so blessed. <br /><br />Pregnancy update: still throwing up, still feeling nausea 24/7 (worst at night), not sleeping much - but as Jared says, still smiling :-) It is hard but the countdown to meeting our new baby is coming soon. That keeps me going.<br /><br />Moving: thank you for all the offers of help! We are doing well with sorting and packing and have hired movers to do the heavy work. We are looking forward to settling into our new home and are praying Noah makes a smooth transition. He doesn't like change very much so we anticipate a few tough nights, but we hope he'll accept his new surroundings.<br /><br />Talk to you soon, everyone!Dykstrashttp://www.blogger.com/profile/00490149516314290697noreply@blogger.com0tag:blogger.com,1999:blog-2984735112774498751.post-12638600254482745582011-02-24T11:24:00.016-07:002011-02-24T12:36:12.808-07:00T minus 3 weeks<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyFSVNrNrIrRj7YQxR3PEmIJmUYTdOY8BhRH9pmA5JOacuxD8oaqYJnb44J2WrJGqbj51OM86Jn13HxM4GdV6i7tu4L8TFRNlPQbU2cz_Ao85PFm8RX1NlkbaWNyyiVQig4J-53gsMa_zT/s1600/DSC_3906.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyFSVNrNrIrRj7YQxR3PEmIJmUYTdOY8BhRH9pmA5JOacuxD8oaqYJnb44J2WrJGqbj51OM86Jn13HxM4GdV6i7tu4L8TFRNlPQbU2cz_Ao85PFm8RX1NlkbaWNyyiVQig4J-53gsMa_zT/s320/DSC_3906.JPG" alt="" id="BLOGGER_PHOTO_ID_5577340378843462930" border="0" /></a><br /><div style="text-align: center;"><span style="font-size:130%;">Taking a feed while enjoying some cartoons (in Canmore for a night away with mommy and daddy).<br /><br /></span></div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhe7hWR5G4oO7vEocnniQd469WScz4uXA8wK1XZlDT6RMDts3Ln0RlcSprJ6hwgAEQj7oZKIRXyPmxxW4KT4x6OH7ZP44yDm-4Hd4jpJFx4Wik6STkQCCnZX0xC312-MlGs3MyQDmXz0e-h/s1600/DSC_3915.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 213px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhe7hWR5G4oO7vEocnniQd469WScz4uXA8wK1XZlDT6RMDts3Ln0RlcSprJ6hwgAEQj7oZKIRXyPmxxW4KT4x6OH7ZP44yDm-4Hd4jpJFx4Wik6STkQCCnZX0xC312-MlGs3MyQDmXz0e-h/s320/DSC_3915.JPG" alt="" id="BLOGGER_PHOTO_ID_5577340372572349810" border="0" /></a><br /><div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwEQffA8blZVkUGejz48a7xqcBAzxcTef41E0XN6H30I3nGVFfDpov2D7wCZ79F14_2Md524fx5rlcMso5DLMcy5N7J2saGyGDWd7kh2fxbXDnlJ8gdzU2oDtCaVZZ8IB5c2QYrpjDnUYi/s1600/DSC_3902.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 213px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwEQffA8blZVkUGejz48a7xqcBAzxcTef41E0XN6H30I3nGVFfDpov2D7wCZ79F14_2Md524fx5rlcMso5DLMcy5N7J2saGyGDWd7kh2fxbXDnlJ8gdzU2oDtCaVZZ8IB5c2QYrpjDnUYi/s320/DSC_3902.JPG" alt="" id="BLOGGER_PHOTO_ID_5577340363941333298" border="0" /></a><br />"What are we doing, mommy and why am I wearing this funny suit?"<br /><br /></div><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgp_5UE0GahbGiaAdoMT6zAWquDtoK-62UzdSVU_jentBi3OmD1xMGYNW16vw6Towg6y7jjKSzc4Hq-A47_nOw3e-aHOvLdjd4d07Ce9Tukvoy384MZIlVDbd0L1HXoTnUBnPPKTMNipk4H/s1600/DSC_3904.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 213px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgp_5UE0GahbGiaAdoMT6zAWquDtoK-62UzdSVU_jentBi3OmD1xMGYNW16vw6Towg6y7jjKSzc4Hq-A47_nOw3e-aHOvLdjd4d07Ce9Tukvoy384MZIlVDbd0L1HXoTnUBnPPKTMNipk4H/s320/DSC_3904.JPG" alt="" id="BLOGGER_PHOTO_ID_5577340367021865106" border="0" /></a><br />"I hate swimming!!" He screamed the entire time. <br /></div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwEQffA8blZVkUGejz48a7xqcBAzxcTef41E0XN6H30I3nGVFfDpov2D7wCZ79F14_2Md524fx5rlcMso5DLMcy5N7J2saGyGDWd7kh2fxbXDnlJ8gdzU2oDtCaVZZ8IB5c2QYrpjDnUYi/s1600/DSC_3902.JPG"><br /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCCb2V5utygncIM4ZyfjK_VTO0WSMNGZi03KxY-QMsGT8C8gPJ-OhPD24y-54olKf8iW8KUdhHE81gdpl-M0oVyydAxVPK8fWK1q35CmMD0V31SKQDcogI-oeMCAvMJDTdjcUBe6aXmBph/s1600/DSC_3888.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 213px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCCb2V5utygncIM4ZyfjK_VTO0WSMNGZi03KxY-QMsGT8C8gPJ-OhPD24y-54olKf8iW8KUdhHE81gdpl-M0oVyydAxVPK8fWK1q35CmMD0V31SKQDcogI-oeMCAvMJDTdjcUBe6aXmBph/s320/DSC_3888.JPG" alt="" id="BLOGGER_PHOTO_ID_5577340357945339058" border="0" /></a><br /><div style="text-align: center;">"This is more my idea of fun!"<br /><br /></div>Our attention has moved to packing and moving in about 3 weeks. We have decluttered, made many runs to the thrift store and sold a bunch of stuff on kijiji. Thanks to Terri and Jen, we've made a big head start on packing too. It is a good distraction for me right now as this pregnancy is getting tough with minimal sleep and constant nausea. Between Noah's daily needs and organizing for the move, I am managing. We have lots of help lined up for the move, including Jared's parents flying out (thanks!), so I am positive it will go fairly smooth overall.<br /><br />Noah has had 3 wonderful days after a week of fighting what we think was a flu bug. It isn't nice for a tubie to have the flu as it results in constant retching. We took him NPO (meaning no food) for almost 3 days and are just about back to normal feed volumes. He is back to smiling and playing which we missed for a while. Glad to have your happy self back, Noah! Thanks to my sister for helping out with coffee treats, Costco runs and Jared's favourite, boterkoek (butter cake) treats. We are finding it is easier to stay home and run feeds/play/nap....that means we haven't been getting out much. I accept it but find it hard to engage socially as I am the sickest in the evenings so once Noah is fed and down to bed, I'm beat! As always, Jared's gives me breaks on the weekend and I have a chance to nap or get out a bit. So, thank you for the many offers of playdates and outings - sorry we can't often take the opportunity to hang out. There will be a time when it will be easier. But for now, it is a strict schedule to get Noah the calories he needs to grow. And the retching....the drain of the retching. It remains. It is hard. I try to not be discouraged but it is so hard to see Noah in distress that often. He is a trooper and usually returns to his normal self soon after. <br /><br />Noah's sleeping pattern has stabilized, although last night he had a tough time with retching and ended up being awake (but happy) for a few hours. He did sleep until 8:30am this morning which is very unlike him - we'll take it!!<br /><br />Thank you for all the support for Feeding Tube Awareness Week! It was great to have a lot of interaction in the form of questions, comments etc. It really warmed out hearts to see several friends make their own Facebook statuses about tube feeding. Your support and interest in Noah's journey encourages us when the day-to-day continues on.<br /><br />Please pray for our friend Connor. He is at Alberta Children's Hospital right now, being moved to ICU as his oxygen levels and blood gas levels are not improving. It is so taxing on Jerry and Geraldine and of course Connor is struggling just to breathe. Our hearts and thoughts are with you always!<br /><br />Also, please pray for Noah's Grandpa D. who is having surgery today. We love you, Grandpa.Dykstrashttp://www.blogger.com/profile/00490149516314290697noreply@blogger.com3tag:blogger.com,1999:blog-2984735112774498751.post-12339973373941813932011-01-19T07:08:00.029-07:002011-02-01T13:39:18.217-07:00Normal<span style="font-size:130%;"><span style="font-weight: bold; font-family: lucida grande;">The last weeks have felt very normal. That is a refreshing thing to say. It hasn't been particularly easy as all 3 of us have been fighting a nasty virus. For me that means a ton of asthma which has yet to improve. Noah pulled through a tough week last week where he hardly slept, coughed constantly and was a bear of a personality. He is definitely feeling better which is such a blessing.</span><br /></span><div style="text-align: center; font-weight: bold; font-family: lucida grande;"><div style="text-align: left;"><span style="font-size:130%;"><br />We bought a new home and sold our current house in a matter of a week. That's a normal thing to do. Noah is completely off night feeds. Well, that's like most 14 month olds. Normal. I found a wonderful young lady to help me in May and June when the new baby arrives. Normal. Noah sits in his high chair for every feed. Normal. He watches tv and plays with food. Semi-normal :-) He is very vocal and demanding. That's normal, right? He is taking one nap everyday, going to sleep each time. It depends on his coughing when he'll wake up, anywhere from 20 minutes to 2.5 hours. As my pregnancy progresses, I'm enjoying this quiet time in the afternoon. I know it will be short lived with the arrival of a newborn. So I'm savoring the quiet.<br /><br />Noah's trial with asthma meds seems to have little results - that's a good thing! We'll keep trying the mild steroid 2x a day and report back to his Ped. in a few weeks. We'll see what comes after that.<br /><br />We have moved to allowing Noah to lead more and more in his oral experiences. I've allowed myself to accept a very dirty kitchen floor, throwing food away, vacuuming daily, and letting Noah smear food all over himself and his surroundings. He has responded. He now will take a bite or two off spoons - especially things like thicker yogurt. My plan this week is to buy a new batch of food that Noah has never tried and offer them to him. My motto is "wait, watch, wonder" which comes from Dr. Marguerite Dunitz-Scheer, deputy head of the psychosomatic division at the University Children's Hospital Graz, Austria. I hope to share more about her philosophies in the future. She is a specialist in rapid weaning and it has ALWAYS been my default website to visit when I think about Noah's future with eating. Anyways, here is the link: <a href="https://www.notube.at/">https://www.notube.at/</a><br /><br />That being said, today with the help of our OT, PT, SP and Dietitian, we've decided to stay the course with Noah for the time being. He is taking his Pediasure feeds very well. His retching is still difficult and frequent, but it certainly isn't worse. That's huge!<br /><br />With moving in 6 weeks and baby in May, there are a lot of transitions for Noah coming up. I am feeling strongly about reducing tube feeds in the next 6 months but I know that timing is huge. Our team recognizes that Jared and I do not feel a slow reduction in feeds will work for Noah. We've tried it last March and Noah began to reject the bottle even though his feeds were reduced for over a week. Now that he is off the night feeds, he has 12-14 hours off feed and he is absolutely not interested in eating or drinking in the morning. That isn't enough of a gap to develop his hunger. My thinking is perhaps we can see how Noah is doing with his weight in August and following. Praise God that Noah is growing really well and is 22 pounds. I share that with the hopes that no one will compare other kids' weights to his. That has been really frustrating in the past, especially since Noah's unique needs are not the same as a typical eater. Noah is responding to his diet and that is all that matters!<br /></span></div><span style="font-size:130%;"><br /></span></div><div style="text-align: center; font-weight: bold; font-family: lucida grande;"><span style="font-size:130%;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhX0jycheCYpjkhOEJkP1Z0zCUxcqtE_13BMCWfPZY27r_rxBHZLwomOIbl5dL9OjUV4OKC_JDMOI7Pf15-4QucEreqWLSejkrGLSgiV-e4-6wcHT6vXIFQOQulcPexO-3h_r5mQ54Bm_7z/s1600/DSC_3872.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 213px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhX0jycheCYpjkhOEJkP1Z0zCUxcqtE_13BMCWfPZY27r_rxBHZLwomOIbl5dL9OjUV4OKC_JDMOI7Pf15-4QucEreqWLSejkrGLSgiV-e4-6wcHT6vXIFQOQulcPexO-3h_r5mQ54Bm_7z/s320/DSC_3872.JPG" alt="" id="BLOGGER_PHOTO_ID_5566679280221892866" border="0" /></a></span><span style="font-size:130%;"><br />Noah loves to watch the cars and trucks drive by the window in his room - he'll miss that in his new house which is on a quiet street! He doesn't pull himself up to stand but we have many practice exercises and activities from our PT to help encourage him to kneel and stand more independently. She thinks it will take some tough love to happen as he isn't an eager participate when he is being pushed to try new things. We'll persevere and keep encouraging him to get off him bum (even though the bum scooting is darn cute!)<br /><br /></span></div><div style="text-align: center; font-weight: bold; font-family: lucida grande;"><span style="font-size:130%;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgE1czBZpgwMPkibJn_xqgzv1p417IvUhCr6NcD7SwSG8MVBjsA3XHAZ8G9BIfWWUl55AlvuaapibM9KMcFghGtJ0QN5dC9n71Usw-WNGmq4R9JJF4rHyRb7kPxbS2LktTHCKvB8KU-MOrH/s1600/DSC_3875.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgE1czBZpgwMPkibJn_xqgzv1p417IvUhCr6NcD7SwSG8MVBjsA3XHAZ8G9BIfWWUl55AlvuaapibM9KMcFghGtJ0QN5dC9n71Usw-WNGmq4R9JJF4rHyRb7kPxbS2LktTHCKvB8KU-MOrH/s320/DSC_3875.JPG" alt="" id="BLOGGER_PHOTO_ID_5566679272484996194" border="0" /></a></span><span style="font-size:130%;"><br />Minigo! Our new "favourite food" - he loves to play with the gooey stuff and make a big mess! We have been told time and time that our respectful approach to Noah's cues is paying off. The gains are hard to measure, but there is change. It isn't a battle zone, it is simply food and positive experiences with playing. My goals with each tube feed and oral experience is to wait, watch and wonder at what Noah might do! Now when he finds a piece of something on the floor he'll give it a try. Noah's "trying" sometimes is as simple as putting it to his outer cheek and pretending to chew. It is adorable. But he is happy around food. I feel blessed to be a part of his journey.<br /><br /></span></div><div style="text-align: center; font-weight: bold; font-family: lucida grande;"><span style="font-size:130%;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghCCajz6hxDPYboMCVGjVSl6-hy5GPkQtS2p6iTddVX_4u7ya_fgJ2w4koaYI6BQATo1dz9jYMK6wB0CRHZKu1V7AwPve14wdrBR9_mgn60CtQWJvtvazzICAScFs7s4ZhYyQiKTAOglEZ/s1600/DSC_3869.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghCCajz6hxDPYboMCVGjVSl6-hy5GPkQtS2p6iTddVX_4u7ya_fgJ2w4koaYI6BQATo1dz9jYMK6wB0CRHZKu1V7AwPve14wdrBR9_mgn60CtQWJvtvazzICAScFs7s4ZhYyQiKTAOglEZ/s320/DSC_3869.JPG" alt="" id="BLOGGER_PHOTO_ID_5566679268475090578" border="0" /></a></span><span style="font-size:130%;"><br />Feeding the monkey (aim is a bit off)<br /><br />So, we keep on truckin' and now add packing up our house to the list!<br /><br />Take care of yourself.<br /></span></div><span style="font-size:130%;"><a style="font-weight: bold; font-family: lucida grande;" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi50kvuaB3rQTZgCRaI4Ljjyd0_FkIuWmiuXEgOzDI2Ml-PdliYJS0C1lcrbhc4oxCzM1R-b3eZ9x1Dg_TdcBkJ4L9A4qiRSqnS5Ejow3HPxfjL-zajjZzBkXhmu-3HirTtiAgDRNtARsry/s1600/FTAWheartatubieverticalfacebook.png"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 192px; height: 192px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi50kvuaB3rQTZgCRaI4Ljjyd0_FkIuWmiuXEgOzDI2Ml-PdliYJS0C1lcrbhc4oxCzM1R-b3eZ9x1Dg_TdcBkJ4L9A4qiRSqnS5Ejow3HPxfjL-zajjZzBkXhmu-3HirTtiAgDRNtARsry/s320/FTAWheartatubieverticalfacebook.png" alt="" id="BLOGGER_PHOTO_ID_5568822659257654002" border="0" /></a></span><span style="font-size:130%;"><br /><br /><span style="font-weight: bold; font-family: lucida grande;">Just a note: Tube Feeding Awareness Week is February 6-12. There is a facebook page you can check out (search Feeding Tube Awareness) or check out the following website. I've outlined some of the information that is being shared to try and build knowledge and acceptance of tube feeding. We are so thankful that we have this technology to keep our son Noah alive, growing and developing as well as he is!</span><br /><br /><span style="font-weight: bold; font-family: lucida grande;">Information found from the </span><a style="font-weight: bold; font-family: lucida grande;" href="http://www.feedingtubeawareness.com/">Tube Feeding Awareness</a><span style="font-weight: bold; font-family: lucida grande;"> Website:</span><br /><br /><span style="font-weight: bold; font-family: lucida grande;">The general public is not likely to associate tube feeding with infants and children. Moreover, they are not likely to think of children who often look otherwise healthy as having a need for tube feeding. Given the rarity of tube feeding, conditions our children have and the human interest aspect of families who go through great lengths to keep their children healthy, our children can be of interest.</span><br /><br /><span style="font-weight: bold; font-family: lucida grande;">- The overall objective of Feeding Tube Awareness Week is to help raise awareness of enteral feeding as a positive and often life saving medical intervention for those who are unable to eat and drink enough on their own to sustain life, grown and thrive.</span><br /><span style="font-weight: bold; font-family: lucida grande;">-Moreover, we hope to break down the social stigma that is currently attached to tube feeding by:</span><br /><span style="font-weight: bold; font-family: lucida grande;">*Highlighting the positive outcomes associated with tube feeding</span><br /><span style="font-weight: bold; font-family: lucida grande;">* Giving more information about the reasons that children require tube feeding</span><br /><span style="font-weight: bold; font-family: lucida grande;">* Countering stereotypes and misinformation about tube feeding</span><br /><span style="font-weight: bold; font-family: lucida grande;">* Feeding Tube Awareness is a group of parents of infants and children who are tube fed. The mission is to share parent knowledge of day-to-day life of tube feeding that medical professionals are often unable to provide.</span><br /><br /><span style="font-weight: bold; font-family: lucida grande;">Some Information about Tube Feeding:</span><br /><span style="font-weight: bold; font-family: lucida grande;">* There are myriad medical conditions which impair an infant or child’s ability to eat or drink enough to sustain life, grow and thrive.</span><br /><span style="font-weight: bold; font-family: lucida grande;">* Tube feeding allows infants and children to maintain nutrition and hydration while they:</span><br /><span style="font-weight: bold; font-family: lucida grande;">o Grow out of their condition</span><br /><span style="font-weight: bold; font-family: lucida grande;">o Grow stronger for medical procedures</span><br /><span style="font-weight: bold; font-family: lucida grande;">o Battle their disease</span><br /><span style="font-weight: bold; font-family: lucida grande;">o Find safe foods to eat</span><br /><span style="font-weight: bold; font-family: lucida grande;">o Learn that food doesn’t have to hurt them</span><br /><span style="font-weight: bold; font-family: lucida grande;">o Learn how to swallow/eat safely</span><br /><br /><span style="font-weight: bold; font-family: lucida grande;">* Parents of tube fed children are often thought of as not trying hard enough to feed their children, when often we have tried everything.</span><br /><span style="font-weight: bold; font-family: lucida grande;">* The most basic of instincts is to eat and to feed your child. When a child is tube fed, parents often feel like failures for not being able to nourish their child. Moreover, medical complications can be a challenge to navigate making it even harder on parents.</span><br /></span><br /><img src="file:///C:/Users/Darlene/AppData/Local/Temp/moz-screenshot-1.png" alt="" /><img src="file:///C:/Users/Darlene/AppData/Local/Temp/moz-screenshot-2.png" alt="" /><img src="file:///C:/Users/Darlene/AppData/Local/Temp/moz-screenshot-3.png" alt="" />Dykstrashttp://www.blogger.com/profile/00490149516314290697noreply@blogger.com0tag:blogger.com,1999:blog-2984735112774498751.post-53536334760051430302011-01-13T15:02:00.028-07:002011-01-14T16:36:56.940-07:00Hello Pediasure...the week in photos<span style="font-weight: bold;font-size:130%;" ><span style="font-family:lucida grande;">So I'm feeling tired and a little lazy so this post is just a snapshot of our week - saw the pediatrician who wants to treat Noah for asthma, mostly to rule it out. There is significant family history on my side so it is worth trying. We had a chest x-ray today too to ensure Noah isn't aspirating any liquids. We continue to assume the fundoplication is intact and keeping liquids from harming Noah's esophagus.</span><br /></span><br /><span style=";font-family:lucida grande;font-size:130%;" ><span style="font-weight: bold;">The other big change of the week is the introduction of separation anxiety. I've always been so blessed by a kid who goes with anyone, nurseries, etc. Okay, so that might be over for a bit. He cries for "mama" every 5 minutes the last few days. Oh dear...Noah you realize your sibling will be here in May, right? Hopefully it is just a phase. Let's just say he was in sheer terror this morning when I had him put on the table for the x-ray. </span><br /><br /></span><div style="text-align: center; font-weight: bold;font-family:lucida grande;"><span style="font-size:130%;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZYhWSy5i1TfMttApkrlr5HP4-nLu9W3AH7oAUxE9WzjnrUZuWx_o4qgvI4un-Vf4uIrNilvgZEl-QQm8merzazKXkAZpU9qLGKNPHFALDoGSM3TgqvvoNuR6zQMRIM1FdBZxq6GY_lusn/s1600/DSC_3866.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZYhWSy5i1TfMttApkrlr5HP4-nLu9W3AH7oAUxE9WzjnrUZuWx_o4qgvI4un-Vf4uIrNilvgZEl-QQm8merzazKXkAZpU9qLGKNPHFALDoGSM3TgqvvoNuR6zQMRIM1FdBZxq6GY_lusn/s320/DSC_3866.JPG" alt="" id="BLOGGER_PHOTO_ID_5561797393583572242" border="0" /></a></span><span style="font-size:130%;"><br />Hello cookie monster....he took one tiny bite - way to go, Noah!<br />We offer Noah a variety of foods at each feed (5-6 times a day)<br /><br /></span></div><div style="text-align: center; font-weight: bold;font-family:lucida grande;"><span style="font-size:130%;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuUTGT7W04YD1vv0BNmtFS6qpPxAInDLGIT3yK9fuQvjvJ7e2Cg7J-uA6UHp5q4OlnfyAKyb2SS03QjBrwFFYI17yzs_wNpZA82lMN5RHlpmE0rTqdWVua0TTjtQ88zvtK5azFDJuz8h_r/s1600/DSC_3867.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuUTGT7W04YD1vv0BNmtFS6qpPxAInDLGIT3yK9fuQvjvJ7e2Cg7J-uA6UHp5q4OlnfyAKyb2SS03QjBrwFFYI17yzs_wNpZA82lMN5RHlpmE0rTqdWVua0TTjtQ88zvtK5azFDJuz8h_r/s320/DSC_3867.JPG" alt="" id="BLOGGER_PHOTO_ID_5561797389117076098" border="0" /></a></span><span style="font-size:130%;"><br />Sharing a favourite pastime with a favourite person (Oma)<br /><br /></span></div><div style="text-align: center; font-weight: bold;font-family:lucida grande;"><span style="font-size:130%;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHcZYzUxu_O17rz6W8fY0sVMZEs9WqKHvsiTe6u1V85Rw-XuHfUwwKu8cNkTIzQfLf6mRcHtGm6fMxXplqVRE3loqFdvSuhvEsmwMNJoZg54QS_0c6wgG-9giHj6d7N8cdX7ptOQA0Trds/s1600/DSC_3865.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHcZYzUxu_O17rz6W8fY0sVMZEs9WqKHvsiTe6u1V85Rw-XuHfUwwKu8cNkTIzQfLf6mRcHtGm6fMxXplqVRE3loqFdvSuhvEsmwMNJoZg54QS_0c6wgG-9giHj6d7N8cdX7ptOQA0Trds/s320/DSC_3865.JPG" alt="" id="BLOGGER_PHOTO_ID_5561796068521616674" border="0" /></a></span><span style="font-size:130%;"><br />Mom, isn't this like your aerochamber (boo!)<br />We were hoping our kidlets would have mommy's eye sight and daddy's lungs (and neither of our teeth)....it could still happen!<br /><br /><br /></span></div><div style="text-align: center; font-weight: bold;font-family:lucida grande;"><span style="font-size:130%;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhp1munz_KCr9m20pBjWdecW0b3lPpyHCtEp-cYvWy8kUCc0OZd96Uu9h84mEffL-7NpaoVydriW0p8xV3UZbsct3pJyVl9d5KYQadY5RGcHoohhVTRh4lrFRepjl6bVebdD5-iimBk1Z_N/s1600/DSC_3862.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhp1munz_KCr9m20pBjWdecW0b3lPpyHCtEp-cYvWy8kUCc0OZd96Uu9h84mEffL-7NpaoVydriW0p8xV3UZbsct3pJyVl9d5KYQadY5RGcHoohhVTRh4lrFRepjl6bVebdD5-iimBk1Z_N/s320/DSC_3862.JPG" alt="" id="BLOGGER_PHOTO_ID_5561796062509521346" border="0" /></a></span><span style="font-size:130%;"><br />Trying to make taking asthma medications fun - um, right? He is starting his dose tonight (I was slow getting the prescription filled due to Calgary -35 degree cel. with wind chill).<br /><br /></span></div><div style="text-align: center; font-weight: bold;font-family:lucida grande;"><span style="font-size:130%;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiu3SODAe3xT9ILr5HdFB5aRTThIsquK8qdM9Og-eUCXRtyGcpTEvNZSbXqxjkrbFZYhXTGRfkFmgP7wTwN2vsFHMJjc_K3nx70Lvf4WcSjmqxScx5-c6FLhhv49XisexMeN6jTZ3kqo0b0/s1600/DSC_3858.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiu3SODAe3xT9ILr5HdFB5aRTThIsquK8qdM9Og-eUCXRtyGcpTEvNZSbXqxjkrbFZYhXTGRfkFmgP7wTwN2vsFHMJjc_K3nx70Lvf4WcSjmqxScx5-c6FLhhv49XisexMeN6jTZ3kqo0b0/s320/DSC_3858.JPG" alt="" id="BLOGGER_PHOTO_ID_5561796053714329538" border="0" /></a></span><span style="font-size:130%;"><br />Neocate/Pediasure mix - as of Thursday, January 13, we are fully on Pediasure.<br />Huge cost savings and very convenient. Jared asked where I'd like to go on vacation with all the extra cash we'll have :-) I don't think he's serious, though. Sigh.<br />Things are going well so far and I haven't seen this much poop from him in a long time which is excellent.<br /><br /></span></div><div style="text-align: center; font-weight: bold;font-family:lucida grande;"><span style="font-size:130%;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbfBd9BHRQw-_scD-qYLQDlx4yPazLzefkGq5gFYcsFjIRMb0XIVjLrDPqvZxp6dM1ZMffn8me2AbQA0Dq_IAND07NYs9XMzeB-Ty5ujUTJ78RiolCCWMUqNnfe3SfdSOZBy_tqB4Pbch7/s1600/DSC_3857.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbfBd9BHRQw-_scD-qYLQDlx4yPazLzefkGq5gFYcsFjIRMb0XIVjLrDPqvZxp6dM1ZMffn8me2AbQA0Dq_IAND07NYs9XMzeB-Ty5ujUTJ78RiolCCWMUqNnfe3SfdSOZBy_tqB4Pbch7/s320/DSC_3857.JPG" alt="" id="BLOGGER_PHOTO_ID_5561796050777913346" border="0" /></a></span><span style="font-size:130%;"><br />6 bolus feeds a day means lots of Thomas the Train, Sesame Street and other shows<br />Noah is chewing a sippy cup with rice milk in it<br />But look I am feeding my boy myself, not through a robot (the pump)! A GREAT CHANGE.<br /><br /><br /></span></div><div style="text-align: center; font-weight: bold;font-family:lucida grande;"><span style="font-size:130%;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYEhhzxmJje3KTrTxXX_86-IDVGJ9txy1M-K6-pR3hJtNKl7MbXHw6OAHwmvKFyW3kgiZEMcG236K8ei016wjtWwUkJYVJ9mx9UF0UMIgFk7qVSXuAYjU-waZaEFD1U8JdmM161bId3o9x/s1600/DSC_3856.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYEhhzxmJje3KTrTxXX_86-IDVGJ9txy1M-K6-pR3hJtNKl7MbXHw6OAHwmvKFyW3kgiZEMcG236K8ei016wjtWwUkJYVJ9mx9UF0UMIgFk7qVSXuAYjU-waZaEFD1U8JdmM161bId3o9x/s320/DSC_3856.JPG" alt="" id="BLOGGER_PHOTO_ID_5561796046049178018" border="0" /></a></span><span style="font-size:130%;"><br />The feeding regime - 2 medication doses a day, plus prune nectar, plus water boluses<br /><br /><br /></span></div><span style=";font-family:lucida grande;font-size:130%;" ><a style="font-weight: bold;" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHh6OkIVC9ive8j_mY0_PGM6R2eS08eZXg2XdpF-OEuGEAFcZuRYmwnwnsohA_jQSTct-zi3HiyLIgxarfC7k6viByevcAN9I71EBTDB1Z_Loh2ns2-VOQVtb0LCis7u3SFkntlNOAgy9Q/s1600/DSC_3868.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHh6OkIVC9ive8j_mY0_PGM6R2eS08eZXg2XdpF-OEuGEAFcZuRYmwnwnsohA_jQSTct-zi3HiyLIgxarfC7k6viByevcAN9I71EBTDB1Z_Loh2ns2-VOQVtb0LCis7u3SFkntlNOAgy9Q/s320/DSC_3868.JPG" alt="" id="BLOGGER_PHOTO_ID_5562187200247911746" border="0" /></a></span><span style=";font-family:lucida grande;font-size:130%;" ><br /></span><div style="text-align: center;"><span style=";font-family:lucida grande;font-size:130%;" ><span style="font-weight: bold;">Weird picture - I've been forgetting to mention this pregnancy much. So, here are my wrist splints for carpel tunnel, my duel wedge pillow for sleep, my gummie vitamins (stop stealing them Jared!) which are the only kind I can stomach and the ever present bowl - yup still puking at 23 weeks. Baby is healthy and that is all that matters :-) </span><br /><br /><span style="font-weight: bold;">Stay warm out there (that applies to mostly the readers in Alberta!)</span></span><br /></div>Dykstrashttp://www.blogger.com/profile/00490149516314290697noreply@blogger.com2tag:blogger.com,1999:blog-2984735112774498751.post-62952305895507753372011-01-04T16:49:00.021-07:002011-01-05T14:56:16.102-07:00Here we go...<span style="font-size:130%;"><span style="font-family: courier new;">Noah and I spent the afternoon at Children's Hospital visiting the Infant Services Team. Today's crew consisted of his Speech Pathologist, Social Worker and Dietitian.<br /><br />It was a great feed therapy session (even without the Occupational Therapist). Noah crunched on a bunch of different foods, and we think he did a few swallows! Way to go, Noah. He loves the fact that 4 adults are cheering him on with each bite. He also squished a banana but did not want to eat it today. He only does this well at home a few times a week so I'm really glad he is a willing participant at the hospital clinic.<br /><br />The downer (and only a little because I've learned that Noah tends to rise above the labels he is given except when it comes to feeding) was the speech assessment. Noah is showing a minor speech delay so we may need to shift our focus in session from only food therapy to also include speech therapy training. They will also bring the physio therapist in next session as they believe Noah has some potential delay. He bum scoots but doesn't pull himself up to stand or move around when he is put in a standing position. Again, I'm not going to put too much emphasis on these concerns as there was a time that neurology believed Noah had significant low tone and won't sit on his own. He's certainly proved them wrong! Speaking of, I have to see the neurologist at the end of this month. I think they'll discharge him as a patient but I'll keep you posted.<br /><br />In terms of diet, that's where I feel overwhelmed. Noah's first 2 feeds of the day were just brutal. He cried, retched and punched the syringe throughout, causing mommy to spill lots. He had a tough night and was extremely tired this morning so perhaps it was the lack of sleep. He also has had some stooling issues which I haven't been able to sort out. The lack of bowel movements is troubling. The problem is he isn't constipated and I wonder if it is related to GI issues. I'm always sweating over his bowels so I'll just keep trying to work on it from the inside with prune nectar and water, which usually works.<br /><br />Noah is on day 4 of oral (in our case it goes down the tube) Fluonazole to treat a lingering yeast infection. I held off for almost 6 weeks trying to treat with topical creams etc. but I gave in on the weekend and filled the script. Selfish moment: these are the times I wish we had insurance of some kind. Besides the monthly Omeprazole (PPI), he has had a need for some kind of med. almost monthly. We will of course be fine.....it just hit me today because the Social Worker was shocked that FSCD (Family Support for Children with Disabilities) doesn't cover any of the Neocate. I just shook my head and said "you can't win every battle." That being said, please pray that our 6-month contract for limited services be extended. I meet with the social worker next week for an in-home evaluation. <br /><br />Anyways, the dietitian wants us to stay the course and concentrate Noah's Neocate to 1.0cal and begin mixing in a can of Pediasure daily. Every 2-3 days we'll add less Neocate and more cans of Pediasure. It will likely take about a month to get to the 4 cans of Pediasure daily. I'm still feeling mixed emotions about a milk diet. On the plus side, she was positive about my desire to investigate and research a homemade blenderized diet. While we are not ready to dive head-first into that right now, I've been reading many articles and blogs on the subject. I anticipated push-back from her so I was really encouraged by her willingness to discuss it. Well see what our Dr. says when we chat next.<br /><br />Noah been a grump (I hear him crying at daddy who is putting him to bed). Noah is so strong. When I go to vent him lying down, he'll wrap his legs around his PEG g-tube and twist until I can't get air out. He fights putting pants like it is torture. Plus he thinks it is hilarious when I get stern with him. He's really funny about certain things. Oh well, we'll cope!<br /><br />I still need to call the Pediatrician about Noah's coughing. We have appointments everyday this week for either him or I so perhaps it will have to wait a week or so.<br /><br />So, it is the eve of my 33rd birthday. My life is filled with love, joy and challenge. This year, all I want for my birthday is a full night of sleep - hahahahaha. I like myself a lot more than a year ago. I'm amazed that God heard my pray for help and sent people who understood depression and the prison it feels like. I'm thankful for family and friends who stood by the shell of a woman I was, knowing that Dar would emerge again. I'm grateful now for a sense of understanding when others deal with post-partum. It is totally a separate journey from Noah's. Too often I've had to remind myself and others of that. It wasn't because Noah had health problems that the depression was present. I'm so thankful that God has granted me the return to good mental health (on most days)!<br /></span></span>Dykstrashttp://www.blogger.com/profile/00490149516314290697noreply@blogger.com2tag:blogger.com,1999:blog-2984735112774498751.post-50121854895505495922010-12-30T09:25:00.051-07:002011-01-02T19:19:44.140-07:00Ready to leap into 2011Happy 2011!<br /><br />What a week we've had! Sometimes I feel unsure of sharing good news because things with Noah change so quickly. I hate to disappoint. The joys of being a people pleaser! So, I may have to retract information in this post at a later time......BUT I HOPE I DON'T HAVE TO!<br /><br />We've had a liberation in tube feeding. Last week I asked Jared how he felt about trying a bolus feed via syringe. He was all for it so I began to try 250ml feeds 5 times a day with Noah. I went very slowly at first, taking 45 minutes to pour the formula in through Noah's g-tube. We found that 250ml was a bit much for Noah to tolerate so we moved to 6, 200ml feeds. The best part.....we are doing feeds every two hours, each lasting about 20-30 minutes, and are all finished before bedtime. That means Noah goes to bed without a night tube. I have not washed a feeding bag in 5 days. Does that ever feel good!! Again, this might not be the end of bags/pump etc. but for however long it lasts, will take it.<br /><br />Not surprising to us (but it does seem to throw the dietitian and Dr. for a loop) Noah is still not willing to eat or drink in the morning. Even after being off formula since 7pm in the evening, he won't even take a sip of water in the morning. Like I said, not surprising to us. Most of the professional "theories" given about Noah have been proven otherwise by his choices. All we can do is offer him food and let him decide what to do.<br /><br />I have a product to share about this week. I am loving Noah's new Button Buddies. They snug up around his g-tube and seem to be much more effective at soaking up leaks from his stoma. We had been cutting make up remover pads for the last 6 months. Despite stopping acid production via medication, the leaking does cause skin irritation. Hopefully this will help his red skin around the stoma. Here is a picture of the set I ordered for Noah - they are fun and colourful!<br /><br /><a href="http://www.mybuttonbuddies.com/index.html">http://www.mybuttonbuddies.com/index.html</a><br /><br /><br /><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjb782CZCj81U8loq4qsGsl_sQMcQF9ZCcjtNCPscbIli-5eZW9z1tYThj6Fwqvw8OV-z9wJrifUzzJHOVINYdlig7_X1i4jxZbUlsSzaPyBs1QBtwHWGKcxOf10WjUOL-T4oQ8pqiJmm3S/s1600/DSC_3854.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjb782CZCj81U8loq4qsGsl_sQMcQF9ZCcjtNCPscbIli-5eZW9z1tYThj6Fwqvw8OV-z9wJrifUzzJHOVINYdlig7_X1i4jxZbUlsSzaPyBs1QBtwHWGKcxOf10WjUOL-T4oQ8pqiJmm3S/s320/DSC_3854.JPG" alt="" id="BLOGGER_PHOTO_ID_5556895899250682242" border="0" /></a><span style="font-weight: bold; color: rgb(0, 0, 102);"><br />HAPPY 31st BIRTHDAY to daddy!</span><br /><br /></div><div style="text-align: center;"><br /></div><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggCyOQKwEHg-3Qs3l9UYV4pXLUtYPoiQhXZIhzg0t3X4SfHJb4lLfjTOueQ5XixOH4GsPXpQNEiUHl7-76rFd5rftva5RL25eul-YdwFegt-wsR1gGfvSHYOXtST7dLGRW4PdkyUWacMNX/s1600/DSC_3855.JPG"><img style="cursor: pointer; width: 213px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggCyOQKwEHg-3Qs3l9UYV4pXLUtYPoiQhXZIhzg0t3X4SfHJb4lLfjTOueQ5XixOH4GsPXpQNEiUHl7-76rFd5rftva5RL25eul-YdwFegt-wsR1gGfvSHYOXtST7dLGRW4PdkyUWacMNX/s320/DSC_3855.JPG" alt="" id="BLOGGER_PHOTO_ID_5556895301109811074" border="0" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0QF32ORoLN5vXJ5bTyifJPPIXnszmDQZ3QdWdgGJBoc8QgXuSzaklt9n-PRl5_ld-dimT8Vg7WmILVy9FizDDL1fk9n9ZTUtxG6Y8Hiofo7MTUm903GpOQ8JfOa7i8LQ3lX7jK0aAyJFS/s1600/DSC_3837.JPG"><img style="cursor: pointer; width: 213px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0QF32ORoLN5vXJ5bTyifJPPIXnszmDQZ3QdWdgGJBoc8QgXuSzaklt9n-PRl5_ld-dimT8Vg7WmILVy9FizDDL1fk9n9ZTUtxG6Y8Hiofo7MTUm903GpOQ8JfOa7i8LQ3lX7jK0aAyJFS/s320/DSC_3837.JPG" alt="" id="BLOGGER_PHOTO_ID_5556895284691381458" border="0" /></a><br /><br /><br /><span style="font-weight: bold; color: rgb(0, 0, 102);">Pantless at Oma's house due to a med port incident! </span> <span style="font-weight: bold; color: rgb(0, 0, 102);">I quickly changed the port but the pants were done for. You can see Noah's muscle tissue removal on his upper thigh - nasty scar....but the fundo scars on his tummy are pretty hard to find now.</span><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsz4sGTSF9camQsVNCF8eO9nC_aTOrZUSMPA03VvChrDwHlQiwoKrCI4M8LzvkJLAzWbtOUdPu7QvLUje7vmMTgejKCdUyvfnEiTBMKG5w9IC0j6scRYr5wxDGprSJ_raxlQhtHOW7jQxD/s1600/DSC_3838.JPG"><img style="cursor: pointer; width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsz4sGTSF9camQsVNCF8eO9nC_aTOrZUSMPA03VvChrDwHlQiwoKrCI4M8LzvkJLAzWbtOUdPu7QvLUje7vmMTgejKCdUyvfnEiTBMKG5w9IC0j6scRYr5wxDGprSJ_raxlQhtHOW7jQxD/s320/DSC_3838.JPG" alt="" id="BLOGGER_PHOTO_ID_5556895277245324658" border="0" /></a></div><div style="text-align: center;"><br /></div><br />And now, due to popular demand at church this morning...a bum scooting video!<br /><br /><br /><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dy4k34o3O9RksLvjAo0hi98Fq5pZexrjsw9J32NkrrZcvXS_gmhnS_-KPg1m2LUtvjjsixFyPOU_2mfF5JIpA' class='b-hbp-video b-uploaded' frameborder='0'></iframe>Dykstrashttp://www.blogger.com/profile/00490149516314290697noreply@blogger.com3tag:blogger.com,1999:blog-2984735112774498751.post-76873973580295970662010-12-22T13:12:00.022-07:002010-12-26T20:24:29.934-07:00Christmas and coughing<div style="text-align: center;"><div style="text-align: left;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqLbl_W5AdLyA9CU3oWr-hqeFmBlTgCvrqDMKKa6NW4Wp_r0hIWPn4me6hlh-H9T4fONjEBbteOh3XkbmRZreYU9aj_GMWqXWLEMRAhegnY5XNl2qlmQoZEca8rTg15tLtuIivSii6iyv8/s1600/DSC_3829.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 213px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqLbl_W5AdLyA9CU3oWr-hqeFmBlTgCvrqDMKKa6NW4Wp_r0hIWPn4me6hlh-H9T4fONjEBbteOh3XkbmRZreYU9aj_GMWqXWLEMRAhegnY5XNl2qlmQoZEca8rTg15tLtuIivSii6iyv8/s320/DSC_3829.JPG" alt="" id="BLOGGER_PHOTO_ID_5554811603774724434" border="0" /></a><br /></div>Our little Christmas bear learning the art of standing!<br />He only goes into a standing position when we set him up<br />but he is getting more sturdy as the days go by.<br /><br /></div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUuF-t9GCYuSM15hdjNTxXwZOoXdfhxIU3iYD0J_PaH1WPp7MHdxx_SB64_1ZHhnenncwKCAewFfLNNGuTjnReGR5cphWXpyCCEzHWNRp8O3j3Hj71ED8gepQubTLnCLxNcB2kdmVM9E3_/s1600/DSC_3827.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 213px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUuF-t9GCYuSM15hdjNTxXwZOoXdfhxIU3iYD0J_PaH1WPp7MHdxx_SB64_1ZHhnenncwKCAewFfLNNGuTjnReGR5cphWXpyCCEzHWNRp8O3j3Hj71ED8gepQubTLnCLxNcB2kdmVM9E3_/s320/DSC_3827.JPG" alt="" id="BLOGGER_PHOTO_ID_5554811602024147202" border="0" /></a><br /><div style="text-align: center;">Practicing big smiles for mommy - he is so much fun to be around!<br /></div><br /><br /><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRT4Lh5zh9nj5m0weNiYOmfC3znmupl-1790q4hvBbPAhypepNVLh7QDZ_MFWRiAMaD8W4R08x5HgkIWDlBGNT1suZ2YfRveht7kPEIWWcuaxIwk73S5_qsjj_2vqjIF-YkxgrFOWQHXVz/s1600/Image02.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 261px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRT4Lh5zh9nj5m0weNiYOmfC3znmupl-1790q4hvBbPAhypepNVLh7QDZ_MFWRiAMaD8W4R08x5HgkIWDlBGNT1suZ2YfRveht7kPEIWWcuaxIwk73S5_qsjj_2vqjIF-YkxgrFOWQHXVz/s320/Image02.jpg" alt="" id="BLOGGER_PHOTO_ID_5553602413423318658" border="0" /></a><br />Blessings abound.<br />Love you already, baby Dykstra peanut #2<br /><br /><div style="text-align: left;"><br /></div></div>Christmas was good. It was filled with Christ-filled moments, time with family/friends and food. It was not a time for sleep, however. We are quite frustrated with Noah's coughing fits which often lead to retching. He will cough for hours during the night and lately the coughing has lead to screaming fits throughout the night. We find this both physically and emotionally tiring. Despite letting him "cough it out" on his own, it keeps us awake as we know at some point he'll retch and need a vent. He also isn't comforted by our presence and cuddles - he really wants to be left alone.<br /><br />Now, he may have a touch of a cold which isn't helping at present. He has been coughing for months and months. Behinds having a fundo, Noah is on Proton Pump Inhibitor medication which is all supposed to control his reflux coughing.<br /><br />I've had a nagging suspicion for a long time that his coughing is perhaps not even reflux related. I am not going to stand by and watch him struggle through his days while being told by Dr. after Dr. that he is fine. Or that he is just a "retcher." Jared and I are immensely frustrated by the dismissals we've received lately from Drs. This is no way for such a happy-go-lucky kid to have to live. If there is nothing "wrong" with Noah, why does he cough and scream every time he is venting on a retch? We will be fervently advocating for Noah when the Pediatrician's office opens again in January.<br /><br />Living without a diagnosis sometimes seems manageable. They can't find anything which means Noah's future is full of positive prospects. But it is quite stressful at times too. I read a statistic stating the marriage failure rate in households with an undiagnosed high-needs child is 90%. Startling. Now, I'll reassure you that our marriage is firmly founded in the promises of God and the vows we made to each other over 4 years ago. We'd had help to communicate when the stress was at the highest level. We are deeply committed and hopelessly in love :-) That being said, I can see where the divides can come when you are wading in deep waters without a sense of what you are wading through.<br /><br />While we wait, ponder, worry and wonder...here are some things to keep in mind/prayer:<br /><br />1. Thankfulness that Allie has been diagnosed with a specific allergy and continued prayer for mom and dad as they move forward with their plans to modify her diet. Pray that this is the reason Allie won't eat and that she will have healing in her little body.<br /><a href="http://alliesabnormalappetite.blogspot.com/">http://alliesabnormalappetite.blogspot.com/</a><br />2. Pray for Connor and his brave parents as they tread through some tough stuff.<br /><a href="http://www.caringbridge.org/visit/connorv">http://www.caringbridge.org/visit/connorv</a><br />3. Those who have recently lost loved ones and feel their losses even more during the holidays.<br />4. Gratefulness for Grandpa D.'s recovery from surgery.<br />5. Our dear friend Linda who has been diagnosed with cancer. She was truly an angel to us this last year and now she needs our support and prayer.<br />6. That Noah will tolerate a change to his diet in January. We are planning to go to Pediasure, a full liquid milk-based diet. It has much more calories which means less volume but it also means a huge change for his gut.<br /><br />With thanks for your care.Dykstrashttp://www.blogger.com/profile/00490149516314290697noreply@blogger.com1tag:blogger.com,1999:blog-2984735112774498751.post-56550462093401099682010-12-16T19:15:00.021-07:002010-12-19T16:30:57.661-07:00A Letter<div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;"><span style="color: rgb(102, 0, 204);font-size:130%;" >I found a really helpful website lately and it contained a letter you could provide to family and friends. It addresses many of the things Jared and I experience with Noah so I thought I would share portions of the letter. I have added some thoughts about Noah in brackets. You can view the full letter and other information on the following website:</span><br /><br /><a href="http://www.feedingtubeawareness.com/Family.html">http://www.feedingtubeawareness.com/Family.html</a><br /><br /><span style="color: rgb(102, 0, 204);"><span style="font-size:130%;">Thanks for taking the time to visit our blog and sharing in our journey with Noah's feeding. <span style="color: rgb(204, 0, 0);"><span style="font-size:180%;">MERRY CHRISTMAS from the Dykstras. Hugs!</span></span></span></span><br /><br /><br /><span style="font-weight: bold;">Dear Friends and Family,<br /><br /></span></span></div><div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;">We want you to understand a little more about what it is like to have a tube fed child. Because often, it means so much more than our child eats differently than other children. Nearly all tube fed children have sensory issues from multiple hospitalizations, invasive testing, far too many doctor appointments and generally not being able to interact with their environment like other children do (<span style="font-style: italic;">Noah is very sensitive about his g-tube site and also touching his nose and face at times). </span><br /></span></div><div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;"><br /></span></div><div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;">Moreover, children with feeding tubes often have them because of having complex medical issues. The irony is that many tubie kids do not look sick. <span style="font-style: italic;">(That is absolutely Noah - we have no known diagnosis). </span>However, because they do have underlying medical issues, they may be at increased risk when exposed to germs. Please understand it takes a lot to keep our kids looking and feeling healthy.<br /></span></div><div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;"><br /></span></div><div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;">Here are some things we would like you to know:<br /></span></div><div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;"><br /></span></div><div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;"><b>Getting child care for a tube fed child is very difficult</b><br /></span></div><div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;">It is not an option to get a babysitter off the street. Many of us spent time in the hospital learning how to care for our tube fed child at home. There is medical equipment that needs to be learned. Feeding schedules hold little flexibility, so start times are often important. Even those of us with family nearby may not have family members who are willing or able to learn (<span style="font-style: italic;">We have been very fortunate to have many offers for help, as well as 3 wonderful respite workers that we have trained. Oma is also a very willing tube feeder and was so brave to do several NG changes when I needed the help).</span><br /></span></div><div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;"><br /></span></div><div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;"><b>If we are going out we need to plan in advance</b></span><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;"><br /></span></div><div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;">We need to arrange childcare or for the other parent to be home so that someone can take care of our tubie. Moreover, we need to make sure that whatever is needed (clean medical supplies, formula, medications) are all set up. All that said, we do like to see friends and go out. Like any parent, we might have things that come up that require us to change plans. (<span style="font-style: italic;">Thank you for our many friends who welcome Noah with open arms. We've done many feeds at other peoples' homes and we feel so blessed. Terri even had a hook in her living room back in the gravity feeding days). </span><br /></span></div><br /><div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;"><b>Restaurants</b></span><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;"> are not easy for tubie kids. Any child in a restaurant can be difficult, but tubie kids typically can't be distracted by food. Moreover, people tend to stare when you bring a child to a restaurant and do not feed them. <span style="font-style: italic;">(Our restaurant experiences have not gone well; we try to avoid this if at all possible). </span><br /></span></div><div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;"><br /></span></div><div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;"><b>We are tired</b><br /></span></div><div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;">There are a lot of things that keep tubie parents up at night. There really isn't such a thing as letting a tubie cry it out. Kids with reflux aren't always the best sleepers. We investigate every noise. It could mean our child is in distress, it could mean they are caught up in their tubing, it could mean that their bed is soaked because the feeding tube med port popped open and formula has been flowing into the bed. Moreover, monitors or feeding pumps can and do beep. (<span style="font-style: italic;">We are doing better in the sleep department lately but do respond to every sound Noah makes). </span><br /></span></div><div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;"><br /></span></div><div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;"><b>We can also be emotionally drained</b><br /></span></div><div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;">It is hard to see tubes coming out of your child day in and day out. It is a constant reminder they are not like other kids. Some tubie kids are undiagnosed. They have a list of conditions, but docs are still looking for the overarching diagnosis. This is very hard on parents. Moreover, kids may be going through a lot of testing, including testing for things that are life threatening. I am not sure my own family understood how stressful this was for me. Even with a diagnosis, there can be worry about what the future holds. Moreover, after having child where a new condition appears every few months, you can feel like you have post traumatic stress...you are just waiting for something else to go wrong.<br /></span></div><div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;"><br /></span></div><div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;"><b>Our level of empathy may have changed</b><br /></span></div><div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;">We understand that it is difficult to for you to have a kid who has an ear infection or an infant who needs shots. But, we may not feel the same level of empathy as other parents. We have seen things parents shouldn't have to see. Many of us shouldn't have seen our kids intubated and connected to so many wires you aren't sure how to pick them up (if you are allowed to pick them up). We have exposed our kids to anesthesia, barium, x-rays and prescription medications. We have had to hand our kids over to surgeons. <span style="font-style: italic;">(Over the last year we have repeatedly held Noah down for procedures, subjected him to invasive testing and it has taken a toll on all of us).</span><br /></span></div><div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;"><br /></span></div><div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;"><b>We don't expect sympathy or necessarily want sympathy from you</b><br /></span></div><div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;">We love when people get that this is hard and acknowledge what we do for our kids. The vast majority of us feel like any parent would step up and do the same thing if their child had medical issues. We don't particularly feel that we were chosen for this based on super special abilities. Everyone can do this, but thankfully most people do not have to. Rather than telling us how bad you feel for our child or for us, try to focus on an accomplishment or acknowledge the challenge. It is great that [Child] is handling this so well. Or I know it must be hard on you [Parent], but you are doing a good job. (<span style="font-style: italic;">If you don't know what to say, that is okay too. Sometimes that is better than saying something well-meaning but misplaced. We understand the need to see progress in Noah's feeding, but Jared and I have come to a place where we accept that tube feeding is part of our lives and will remain that way indefinitely. When we share our difficulties, it is simply to be honest about our experience, not to make someone feel badly for us). </span><br /></span></div><div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;"><br /></span></div><div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;"><b>It may seem silly to you, but it might be cause for celebration for us if our kids eats even a small amount</b><br /></span></div><div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;">A tablespoon can be a reason to jump for joy. A successful new food may prompt a facebook post. We celebrate these little victories because it gives us hope that one day our child might be able to eat and not have to rely on the tube. (<span style="font-style: italic;">Noah is not taking any calories by mouth right now so our celebrations in oral feeding are few and far between). </span><br /></span></div><div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;"><br /></span></div><div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;"><b>Some of our kids receive government related benefits. It is because any child on a feeding tube is legally disabled and they are entitled to certain services. Please don't think we are milking the sy</b></span><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;"><b>stem or are lazy. </b><br /></span><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;">Specialized formulas can be incredibly expensive. Moreover, some insurance plans do not cover them. Some medical supplies aren't covered by insurance at all. Moreover, many tubie families have to have at least one parent who is home. There are few jobs that have the needed flexibility that is often needed when a child has feeding issues or other medical complexities. (<span style="font-style: italic;">We are very thankful for the disability assistance provided to us for now and find it a necessity to get out and recharge both separately and as a couple).</span><br /><br /><span style="font-weight: bold;">Please, please don't:</span><br /><br /></span><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;"><b>Feed any child something without the parents' permission. </b></span><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;">This is even more true for children with feeding tubes. They may not know how to swallow correctly. There may be certain foods that are restricted from their diet. They may not be able to tolerate food textures and may gag or vomit. They may have severe food allergies. PLEASE UNDERSTAND, WE WANT OUR CHILDREN TO EAT. WE WANT THEM TO EAT SAFELY. If trained professionals and specialists have not gotten our children to eat, you will not be able to during the family gathering.<br /></span><div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;"><br /></span></div><div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;"><b>Compare what a child with a medically complicated history to a perfectly normal child who has never had food hurt them. </b><br /></span></div><div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;">We appreciate that your children or others in the family are wonderful eaters. We just want people to look at what our children can do and what they have overcome. If all you know is food hurts, it is a huge accomplishment to tolerate small amounts of food and have it not hurt.<br /></span></div><div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;"><br /></span></div><div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;"><b>Ask me when my child is coming off the tube! </b><br /></span></div><div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;">The real answer is that a lot of tubie parents do not know. Trust me, we are all anxious for it, too. But, sometimes situations are complex. <span style="font-style: italic;"></span><br /></span></div><div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;"><br /></span></div><div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;"><b>Remind me of the "what ifs" </b><br /></span></div><div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;">Like any parents, sometimes we wonder if an outcome would be different if we had done something different along the way. That said, like most people, we would prefer not to be reminded of these.</span></div></div><div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;"><br /></span></div><div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;"><b>And most importantly, to keep our kids nourished, it is all worth it. </b><br /></span></div><div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;"><b>Thank you. </b><br /></span></div><div><span class="size10 Helvetica10" style="font-family:Helvetica, Arial, sans-serif;color:#000000;"><br /></span></div>Dykstrashttp://www.blogger.com/profile/00490149516314290697noreply@blogger.com1tag:blogger.com,1999:blog-2984735112774498751.post-28619158235984180752010-12-13T19:25:00.024-07:002010-12-13T20:25:23.965-07:00Joy<div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0zPFBZzqw2no-N6hxq4qPbWKG8j9OHoUkpYn5h6LJ2C_S1CzC_6hijukNEAi6mKBv5hQ0UfBhyHwFjT8qPlTSGCmBgS9LGuXoi2lKO_3-kwF8WPdjYUbBQ9zgktRYaExwxH1bCyXHZuWj/s1600/DSC_3810.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 213px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0zPFBZzqw2no-N6hxq4qPbWKG8j9OHoUkpYn5h6LJ2C_S1CzC_6hijukNEAi6mKBv5hQ0UfBhyHwFjT8qPlTSGCmBgS9LGuXoi2lKO_3-kwF8WPdjYUbBQ9zgktRYaExwxH1bCyXHZuWj/s320/DSC_3810.JPG" alt="" id="BLOGGER_PHOTO_ID_5550361750071815106" border="0" /></a><br /><span style="font-weight: bold; color: rgb(51, 0, 51);font-size:130%;" >"Easy Rider" - the grumpy version </span><span style="color: rgb(51, 0, 51);font-size:130%;" ><br /></span><span style="font-weight: bold; color: rgb(51, 0, 51);font-size:130%;" >(but the trike is an awesome gift from Oma!)</span><span style="color: rgb(51, 0, 51);font-size:130%;" ><br /><br /></span></div><span style="color: rgb(51, 0, 51);font-size:130%;" >I've always been a big fan of being "real." I like it when people share deep stuff with me. I'm actually not very good at small talk for that reason. I don't always filter well if I'm stuck in a surface level conversation. Sometimes that means saying stuff that is hard for some to hear. Sometimes it means sharing stuff about Noah's life that is hard for me to say.<br /><br />I just want to thank all of you for reading what was hard for me to write. And for being so encouraging. And for listening and not trying to "fix" it. For calling and letting me cry. For the flowers (G.V.) The hugs without conversations. Nobody seemed surprised to hear that life was tough. No one made me feel like I had to make it better. You have walked with us this last year. You know many of our deepest wounds and greatest joys.<br /><br />We had a good weekend. My house did not get completely cleaned as planned. Ditto on calling people I had planned to. Noah retched a lot. Noah tried food on Sunday but refused all day today. A lady was all annoyed with me at Chapters today because I was venting a retching Noah (ie. sounding like he is chocking and he is beet red) and thus blocking an aisle of books with the stroller. Not kidding, she asked me to move. Here I am holding a syringe full of formula and encouraging Noah that it is going to be okay. So I told her that I had to attend to my son for a moment and I would move shortly. SHE ROLLED HER EYES. Seriously. I blew the formula back down his g-tube, looked up at her and said "the aisle is all yours. Merry Christmas."<br /><br />I left that moment with a life lesson. We all could use a little more love. We need to enjoy life a little more. We need a bit of patience. And some people need to chill out. Maybe we could even be a little joyful?<br /><br />I'm not overjoyed with Christmas. This is a huge disappointment for me as I thought I was gonna live large this season. With the crisis of last year, I thought I'd be abounding in joy. As the weeks have past, that hasn't happened. I cried everyday. Some of the tears were of joy because my son is so joyful. He dances to every carol, claps when I play the piano and smiles at everyone. Church has been so meaningful and challenging at the same time. We've been invited to bring our pain and sadness with us each week. I think of the people I love who are hurting. I've been missing the joy I thought I'd prayed for.<br /><br />Well, my dear friend Geraldine (<a href="http://www.caringbridge.org/visit/connorv">http://www.caringbridge.org/connorv</a>) said it really well - your life might not be filled up and bubbling over with joy but you can be joyful while not "faking" it. The struggle and joy can live together in the peace that Jesus' arrival gives us.<br /><br />Here is a story that was shared at our church yesterday (<a href="http://www.emmanuelcrc.org/"><span style="text-decoration: underline;">http://www.emmanuelcrc.org/</span></a>). I know it is kinda long but it had such an impact on both Jared and I. It is adapted from a sermon by Rev. Diane Hendricks.<br /></span><br /><br /><span style="font-size:130%;"><strong style="font-weight: bold; color: rgb(204, 0, 0);"></strong><span style="font-weight: bold; color: rgb(204, 0, 0);"> It's the most wonderful time of the year! </span></span><br /><br /><strong></strong><span style="color: rgb(204, 0, 0);font-size:130%;" >Only it's not.<br />Not for everyone.<br />Not when there is an empty chair at the table.<br />Not when your body is ravaged with illness.<br />Not when the depression is too much to bear.<br />Not without her voice joining yours on the Christmas carols.<br />Not when you feel all alone even in a crowd.<br />Not when you are not sure you can even afford the rent or mortgage, let alone the presents.<br />Not when they are trying their best to get the best of you.<br />Not when another Christmas party means he will come home drunk again.<br />It's the most wonderful time of the year? No, it's not.<br /><br />And trying to smile and say Merry Christmas is more than difficult. It's pretty near impossible.<br /><br />C.S. Lewis once wrote: "No one ever told me that grief felt so much like fear. I am not afraid, but the sensation is like being afraid. The same fluttering in the stomach, the same restlessness, the yawning..."<strong></strong><br /><br /><strong style="font-weight: bold;"></strong><span style="font-weight: bold;"> It's the most wonderful time of the year! </span><br /><strong><br /></strong>Only it's not.<br />Not after he has died.<br />Not after the doctor gave you the news.<br />Not after they told you they would be downsizing.<br />Not after the tsunami, the hurricanes, the earthquake<br />Not after 911, when there is so much violence and destruction in the world.<br /><br />In truth, it has never been the most wonderful time of the year. Certainly not in the days surrounding that first Christmas so long ago. The story of the birth of Jesus is not to be told with a jolly voice and a merry ho-ho-ho.<br /><br />It is the story of a teenage girl, pregnant with a child that is not her husband's.<br />It is the story of a child born in a dirty animal stall.<br />It is the story of a family of refugees who had to flee their homeland so that their child would not be killed.<br />It is the story of one sent into the world in peace who was condemned to death.<br />It is the story of a light sent to shine in the darkness, which the world snuffed out.<br />It is the story of God's never-ending, self-giving mercy which was rejected and condemned.<br />It’s the most wonderful time of the year.<br /><br /><strong></strong><strong></strong><span style="font-weight: bold;">It's the most wonderful time of the year! </span><br /><br />Yes! it is:<br /><br />If we forget about the tinsel and the trees.<br />Yes, it is, if we forget about the holly jolly tidings.<br />Yes, it is, if we forget about the presents and the ornaments and the trappings.<br /><br />And remember.<br /><br />Remember the story.<br />God exalted Mary, who was alone and afraid among woman.<br />God revealed to Joseph, who felt disgraced, his plan to save the world.<br />Though the world was dark, God sent the light of life to shine.<br />Though the lowly were imprisoned, Jesus set them free!.<br />Though the blind wandered aimlessly, Christ gave them eyes to see.<br />Though the lame had been rejected, through the Holy One they were made to leap and dance.<br />Though the deaf were confined to the silence, the song of life unstopped their ears.<br />Though the sorrowful grieve, God wipes away our tears.<br />Though we were alone, in Jesus Christ, Emmanuel, God is with us.<br />Though the human race rejects God, the Almighty embraces us.<br />Though the world crucified Christ, God would not allow that to be the last word, and gave us the sure hope of the resurrection.<br /><br /><strong></strong><strong></strong>It is the most wonderful time of the year, not because we have to be cheery and happy and merry.<br /><br />But because we don't.<br />We can have heavy spirits and shattered dreams. Broken hearts and deep wounds.<br /><br />And still God comes to be with us<br />To comfort us.<br />To redeem us.<br />To save us.<br />To restore us.<br />To empower us.<br />To strengthen us.<br />To grant us peace.<br />To be raised for us.<br />To hold us in the communion of saints with those whom you have loved and lost.<br />To store our tears in his bottle.<br />To offer us eternal life.<br /><br />It is the most wonderful time of the year. For Christ is born, Love has come; God is with us. With thankful hearts, let us ponder our Savior’s birth in Bethlehem, remembering his promises, that in the fulfillment of time, God will live among us and wipe every tear from our eyes. </span> <span style="color: rgb(51, 0, 51);font-size:130%;" ><br /></span>Dykstrashttp://www.blogger.com/profile/00490149516314290697noreply@blogger.com2tag:blogger.com,1999:blog-2984735112774498751.post-36807886012270041942010-12-09T17:17:00.015-07:002010-12-09T19:46:26.401-07:00Get over it already.<span style="font-size:130%;"><span style="color: rgb(51, 0, 153); font-weight: bold; font-family: georgia;">I have to be honest: I've put up a good front lately. I read over the last few blogs I wrote. Fun. Birthday. We're coping. Yea, right? Well, I'm not being very real. I know I'm going through a phase. I know the tears will dry up again soon. But, in the meanwhile, I might as well be honest. </span><br /><br /><span style="color: rgb(51, 0, 153); font-weight: bold; font-family: georgia;">How I feel: frustrated, tired, weary. I'm not grounded like I have been at times in the past. Noah's has been tube fed for one year. 6 months by NG tube. He has had his g-tube for just shy of 6 months. I've gone through each day lately counting down the minutes of each tube feed. Oh, no. Is he retching or just coughing? Should I vent or wait and see where this goes? If I give him a feed now, will he have time to settle the food before he needs to sleep. Oh no, he just went down and slept for 5 minutes and now he's coughing. Why is his skin breaking down at his stoma again? What am I doing wrong? I need to start a feed but we have an appointment. Should I feed him in the car even if I can't vent? Can he really handle dairy? When do we start trying a full liquid diet? Should I considering making him a homemade blended diet? How in the world can they charge so much for his formula? He is starting to fight his feeds: head-butting or hitting the venting syringe when I'm letting air out. How do I teach him to respect his tube while at the same time understanding his developing feelings towards it. How am I going to feed two babies in a few months? </span><br /><br /><span style="color: rgb(51, 0, 153); font-weight: bold; font-family: georgia;">So, should I buck up? Get strong? Keep it together? Remember those in worse off situations? Pray about it? It would be so much worse! He looks great. He looks so healthy! Just wait, he'll start eating you out of house and home someday. This to shall pass. When God closes a door he opens a window. </span><br /><br /><span style="color: rgb(51, 0, 153); font-weight: bold; font-family: georgia;">Oh boy. </span><br /><br /><span style="color: rgb(51, 0, 153); font-weight: bold; font-family: georgia;">Lots of kids are much sicker than Noah. Lots of parents are much more worn out than we are. But, honestly, it is not easy having a child like Noah. It makes my head hurt that he has no diagnosis, no direction, no further specialized physician care. Each day seems a lot like the one before. I am really trying to make each day with Noah special and just like any other kid, but it is a tough slog. </span><br /><br /><span style="color: rgb(51, 0, 153); font-weight: bold; font-family: georgia;">But I appreciate your encouragement. When you ask how we are really doing. When you say "I can't understand what you are dealing with but we love you and want to support you in the best way possible." When you drop a note or phone call, even I don't respond right away :-) I am really learning how to build others up in a supportive way (I hope I don't lose progress on that with this blog entry).</span><br /><br /><span style="color: rgb(51, 0, 153); font-weight: bold; font-family: georgia;">I have a like/dislike relationship with the tube. I'm not unusual in that respect from other tube feeding parents. We need it. He's getting his nutrition. He's growing. But I feel like we just continue on, the same routine day after day, hoping that someday Noah will start eating or be able to tell us why he can't/won't. I'm doing it. Day in. Day out. I don't have to like it. I give myself permission to not like it. </span><br /><br /><span style="color: rgb(51, 0, 153); font-weight: bold; font-family: georgia;">I'll get it over this phase. I'll cease with the tears. Soon.</span><br /><br /><span style="color: rgb(51, 0, 153); font-weight: bold; font-family: georgia;">Dar</span></span>Dykstrashttp://www.blogger.com/profile/00490149516314290697noreply@blogger.com2tag:blogger.com,1999:blog-2984735112774498751.post-85499582184472715212010-12-02T08:48:00.023-07:002010-12-02T09:50:52.296-07:00Bolus and birthday<div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUnu4iTN2fT2qY7vVRk2KJwQgPjg-DwcCqv5QnMEtvaGIAlF8rRI5bTX6zJ5nJLwvetcQn2FGK_MchX_swhCO39onPw9ga5ORiWAYOQ7D0_pvHgtivKOZY7f7i5szVuWBIR0ai4SWT2wF3/s1600/DSC_3773.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUnu4iTN2fT2qY7vVRk2KJwQgPjg-DwcCqv5QnMEtvaGIAlF8rRI5bTX6zJ5nJLwvetcQn2FGK_MchX_swhCO39onPw9ga5ORiWAYOQ7D0_pvHgtivKOZY7f7i5szVuWBIR0ai4SWT2wF3/s320/DSC_3773.JPG" alt="" id="BLOGGER_PHOTO_ID_5546117105162206786" border="0" /></a><br />First birthday cake: Noah's Ark<br /></div><div style="text-align: center;">Noah, you are pretty lucky to have your Auntie Julie-Ann (pastry chef)<br />make your birthday cakes (and so is your mommy!)<br /><br /></div><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8HlfLWqK-Irmq2sP1kwQs7eGpzH8VsAx0mw8WsdFQvtFWGTBVw_EvHMeW98Yx495uY4WOA2fCJfDawLlrjJHGRaDucCj9b22BbbOnq3kYWhDiP9wJVvpc6B6byebqapqDZmJ5JHMbCZt9/s1600/DSC_3783.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8HlfLWqK-Irmq2sP1kwQs7eGpzH8VsAx0mw8WsdFQvtFWGTBVw_EvHMeW98Yx495uY4WOA2fCJfDawLlrjJHGRaDucCj9b22BbbOnq3kYWhDiP9wJVvpc6B6byebqapqDZmJ5JHMbCZt9/s320/DSC_3783.JPG" alt="" id="BLOGGER_PHOTO_ID_5546117101406249250" border="0" /></a><br />"Happy Birthday to you!" You love your big cousins!<br /><br /></div><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg95f7U2K6W2gqFiAJnGTte0zQcAAfxsjAfGYKKRSqkgG7YvYYn2skE7pGNkSDIAzRj-24bSSkvl2Yg_QdJEAbVJ0NZul3V0g6_p2YkRT_c9-b0GbtKhEyyd38-rHewbeitNS-hfdM1zmGy/s1600/DSC_3806.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg95f7U2K6W2gqFiAJnGTte0zQcAAfxsjAfGYKKRSqkgG7YvYYn2skE7pGNkSDIAzRj-24bSSkvl2Yg_QdJEAbVJ0NZul3V0g6_p2YkRT_c9-b0GbtKhEyyd38-rHewbeitNS-hfdM1zmGy/s320/DSC_3806.JPG" alt="" id="BLOGGER_PHOTO_ID_5546117096468779506" border="0" /></a><br />Did you have fun destroying the cake, Noah? <br /><br /></div><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhaHO94x8HYQK64Fbhitkkyk1HRO3JeBSLqfSeIR_kINBPdhIIXEW1tsBIjOLBmml08Wpa-YqB3AYuhY0YijkpfJXnJ9LmnA6kiDtFsiD3NVVK6pexNlr_O1OdEnOceFwCNx708KFEB2Kn/s1600/DSC_3758.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 213px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhaHO94x8HYQK64Fbhitkkyk1HRO3JeBSLqfSeIR_kINBPdhIIXEW1tsBIjOLBmml08Wpa-YqB3AYuhY0YijkpfJXnJ9LmnA6kiDtFsiD3NVVK6pexNlr_O1OdEnOceFwCNx708KFEB2Kn/s320/DSC_3758.JPG" alt="" id="BLOGGER_PHOTO_ID_5546117086058646434" border="0" /></a><br />And look, a very special surprise party with your special buddies<br />and a delicious cake made by Auntie Terri! She knows how much Noah<br />likes orange and the cake was covered with fun plastic bugs.<br /></div><br /><br /><br /><span style="font-weight: bold;">Birthday - round two!</span><br /><br />Noah had a surprise party thrown by Terri, Heather and his two good buddies. That was super special and really fun! Then my family came over this past Sunday to spoil Noah with lovely gifts and enjoy dinner/cake together. I treasured every moment! Noah covered himself in cake and may have tried a little lick or two...it is always hard to tell with him! His older cousins loved holding him, playing toys, helping him with his bath.<br /><br /><span style="font-weight: bold;">Bolus Feeding</span><br /><br />We are now well into our attempts at only giving Noah bolus feeds. He hasn't been on a continuous night feed in over a week and for that, we give thanks. That means we don't have to get up to deal with the pump through the night (wheee!!!). It is hard to comment on Noah's reaction. He is definitely sleeping better through the night (double wheee) but his mornings are tricky. However, he seems to have moved his coughing spells to between 6-7am rather than 4-6am which is good for everyone. <br /><br /><span style="font-style: italic;">Our new schedule looks like this:</span><br />Day feeds:<br />8am feed 220 ml (one hour)<br />11am feed 220ml (one hour)<br />2pm feed 220ml (one hour)<br />5pm feed 220ml (one hour)<br /><br />Night feeds:<br />7pm feed 220ml (one hour) <br />9pm feed 150ml (one hour)<br /><br />It took a few days to be organized during the day in order to get the feeds in. We are up one feed in the day and the volumes are up to. Noah is retching intensely but we just stick close to his side and vent as needed. Those retches are terrible but Noah reacts as he always has: he stops what he is doing and then resumes once the episode has passed. <br /><br />It will be many months of transition, slowly raising his speed and volume of feed but it is a step in the right direction. Four hours a day of feeds is a lot for Noah but he is managing (and so are his parents). <br /><br /><span style="font-weight: bold;">Prayer requests - if you are the praying type, please join us in keeping the following things lifted up in prayer:</span><br /><br />1. Grandpa D. and his recovery from surgery. It has already been a painful week and healing takes time. Pray for relief from pain and patience in the recovery process. Please pray for Grandma too as she is the caregiver at home and those of us who've done that kind of "stuff" know the stress it can bring. <br /><br />2. I've been following a few blogs as of late and both these little people need our prayers:<br /><br /><span style="font-style: italic;">Little Allie</span><br />http://alliesabnormalappetite.blogspot.com/<br /><br /><span style="font-style: italic;">Sweet Mason</span><br />www.masonjosias.blogspot.com<br /><br />I encourage you to take a look at these blogs to see the journey of other kids with g-tubes (and other complications). <br /><br />3. Keep our friend Connor in mind in prayer. You can see his story and read his momma's open and honest journal at:<br /><br />http://www.caringbridge.org/visit/connorv<br /><br />4. With Christmas "stuff" all around us, please remember those who find this a lonely or sad time. I am challenging myself to have my eyes "open" this year to those who might be struggling. Last year, there were many people keeping an "eye" on us in our crisis with both Noah and my health.<br /><br />5. Pray of thanks that Noah is drinking a few sips of water every day and now wants to have a cookie whenever he sees cookie monster on Sesame Street. Bonus: once in a while, he'll take a little bite or two. Every act of oral eating gives us hope that in the years to come Noah will learn to enjoy food and his body would not react with retches when he tries to eat.<br /><br />BLESSINGS!<br /><br />Dar, Jared & NoahDykstrashttp://www.blogger.com/profile/00490149516314290697noreply@blogger.com2tag:blogger.com,1999:blog-2984735112774498751.post-66120469601452809602010-11-18T16:21:00.012-07:002010-11-24T08:57:34.347-07:00One Year<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyzEhQ0HcrMvAFjDaq361pt1bKHqhduSBJKOfXOb2HYNyVF2zyAVRcbxGdiP28f9ZcJjCZGJOhLzGTKD91j2Jz7Ak0OfSpoWUemuMLvuh3QOZXfL1naQGUva-OFzkrOQL4SPTEhy2qOnez/s1600/DSC_3748.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 213px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyzEhQ0HcrMvAFjDaq361pt1bKHqhduSBJKOfXOb2HYNyVF2zyAVRcbxGdiP28f9ZcJjCZGJOhLzGTKD91j2Jz7Ak0OfSpoWUemuMLvuh3QOZXfL1naQGUva-OFzkrOQL4SPTEhy2qOnez/s320/DSC_3748.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5543135727950117026" /></a><br /><div><div style="text-align: center;"><b><span class="Apple-style-span" style="font-size: large;"><span class="Apple-style-span" ><span class="Apple-style-span" >My Birthday balloons from Mrs. Kristina! I'm watching my favourite show and taking a tube feed. I have to do that 4 hours everyday but I'm a good sport about it all!</span></span></span></b></div><div style="text-align: center;"><br /></div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNJbEHnmcid9fNhY3G8Q-xZ4ZZraNdEqtwgwXz7VuXKZEotuxdcu06Ivvi43lZp8B8cf_ZTwpGurEn8YkkNMSamLqBdpDjkb0sHFhdeLWfJ77jA4A_ZCTPzsPntL0GyMzFtqpgEVdvKjnZ/s1600/DSC_3747.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 213px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNJbEHnmcid9fNhY3G8Q-xZ4ZZraNdEqtwgwXz7VuXKZEotuxdcu06Ivvi43lZp8B8cf_ZTwpGurEn8YkkNMSamLqBdpDjkb0sHFhdeLWfJ77jA4A_ZCTPzsPntL0GyMzFtqpgEVdvKjnZ/s320/DSC_3747.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5543135713405315858" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJpLsGvfe5GVKrCc4n191V5AWe9L2bqQOuhcSNpi4Gwpfk7M0PkSpBTHNhS5j4LT_KQpJyzdTtczwV4yrdtyFXonn-5rtl-fNCOvNd-6iVHrz5pdjA48DimchcGOPJ5XSyk7mqbdy_Cw25/s1600/DSC_3746.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 213px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJpLsGvfe5GVKrCc4n191V5AWe9L2bqQOuhcSNpi4Gwpfk7M0PkSpBTHNhS5j4LT_KQpJyzdTtczwV4yrdtyFXonn-5rtl-fNCOvNd-6iVHrz5pdjA48DimchcGOPJ5XSyk7mqbdy_Cw25/s320/DSC_3746.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5543135706516459762" /></a><br /></div><div><div style="text-align: center;"><b><span class="Apple-style-span" ><span class="Apple-style-span" style="font-size: large;">My mom doesn't seem to go out much when this white stuff (I'm told it is called "snow") falls and the temperature is -30c. I don't mind and just watch all the action out of the living room window.</span></span></b></div><div style="text-align: center;"><br /></div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2dZUVeahgDi7JDhJo1PGXpGjpWWkF-gH_6YfCvxY3yDxrffdmknaVyYyvoz68nytlRauierZTb6bgGIqAjxJCmAVyM4ZDOsbQ2X4mCyBQOrPHO3ndkBObV4Eri2noS-udH_SUn2X7TQ8k/s1600/DSC_3744.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 213px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2dZUVeahgDi7JDhJo1PGXpGjpWWkF-gH_6YfCvxY3yDxrffdmknaVyYyvoz68nytlRauierZTb6bgGIqAjxJCmAVyM4ZDOsbQ2X4mCyBQOrPHO3ndkBObV4Eri2noS-udH_SUn2X7TQ8k/s320/DSC_3744.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5543135693163083554" /></a><b><span class="Apple-style-span" style="font-size: large;"><br /></span></b><div><b><span class="Apple-style-span" style="font-size: large;">Dear Noah Pieter, </span></b></div><div><b><span class="Apple-style-span" style="font-size: large;"><br /></span></b></div><div><b><span class="Apple-style-span" style="font-size: large;">It is hard to believe that a year ago you came into our lives and took over our hearts! You've had to put up with rookie parents (sorry buddy) and a lot of things that make your body feel yucky. Guess what?? You have done all of that with a smile on your face - that's why we call you our resilient boy!</span></b></div><div><b><span class="Apple-style-span" style="font-size: large;"><br /></span></b></div><div><b><span class="Apple-style-span" style="font-size: large;">You've had a great adventure over the last year. You have learned that life on earth can be a wonderful place while at the same time filled with difficulty. Nothing has held you back. Not all the tests, the NG tube, surgery, a g-tube, complications, and those awful retches you have each and every day. You blow us a kiss when the retch is done. It makes me wonder if you do that to make mom and dad feel better? It wouldn't surprise me if you did. I think you realize it could be so much worse and thinking of our friends we've met in person and online who struggle so much more than you do (we love you, Connor!!)</span></b></div><div><b><span class="Apple-style-span" style="font-size: large;"><br /></span></b></div><div><b><span class="Apple-style-span" style="font-size: large;">You have smiled your way into the hearts of countless people - family, friends, medical and para-medical professionals. Everyone is happy to see you. Even when you have to do less fun things (like 4 hours of day feeds) you are okay with it, especially if Sesame Street is on the laptop! We are so proud of you. You've come a long way from needing to eat 24 hours a day. Wow!</span></b></div><div><b><span class="Apple-style-span" style="font-size: large;"><br /></span></b></div><div><b><span class="Apple-style-span" style="font-size: large;">Now we start a new year with you and we are so excited to see what you'll learn to do. We will learn right along with you. </span></b></div><div><b><span class="Apple-style-span" style="font-size: large;"><br /></span></b></div><div><span class="Apple-style-span" style="font-size: large;"><b>Thank you for being such a wonderful little boy. We love you so much, Noah.</b></span></div></div><div><span class="Apple-style-span" style="font-size: large;"><b><br /></b></span></div><div><span class="Apple-style-span" style="font-size: large;"><b>Love and huggies,</b></span></div><div><span class="Apple-style-span" style="font-size: large;"><b><br /></b></span></div><div><span class="Apple-style-span" style="font-size: large;"><b>Mommy & Dadddy</b></span></div><div><span class="Apple-style-span" style="font-size: large;"><b><br /></b></span></div><div><span class="Apple-style-span" style="font-size: large;"><b>ps. </b></span><b><span class="Apple-style-span" style="font-size: large; ">Thanks to our Ontario family for the little birthday party we had a few weeks back and a big thanks for all the birthday wishes we've been receiving for our little blonde guy. We feel the love, that's foresure.</span></b></div><div><b><span class="Apple-style-span" style="font-size: large; "><br /></span></b></div><div><b><span class="Apple-style-span" style="font-size: large; ">pps. Please pray for Grandpa D. as he has a big surgery this coming week and needs our prayers for healing, comfort and peace. </span></b></div>Dykstrashttp://www.blogger.com/profile/00490149516314290697noreply@blogger.com0tag:blogger.com,1999:blog-2984735112774498751.post-26108380305508230162010-11-15T16:01:00.006-07:002010-11-15T16:20:43.490-07:00Grief<span style="color: rgb(51, 51, 255); font-weight: bold;font-family:georgia;font-size:130%;" >This blog is primarily about Noah and his journey with tube feeding. But it is also about life in general and today our hearts are heavy for my brother-in-law, Rob, and my sister, Julie-Ann and their two boys. Rob's dad, known to us all as Nonno, passed away and into the arms of His Heavenly Father this morning.<br /><br />I, and subsequently Jared and Noah, have been loved and cared for (and fed) by Rob's parents over the last decade. Even amidst their own pain of Nonno's cancer this past year, they have been so kind and generous to Noah. I would ask you pray for the whole family and particularly dear Nonna as she has lost her partner of over 50 years.</span><br /><br /><br /><br /><div style="text-align: center;"><span style=";font-family:georgia;font-size:130%;" ><span style="font-weight: bold;">I Will Rise</span> (Tomlin)<br /><br />There's a peace I've come to know<br />Though my heart and flesh may fail<br />There's an anchor for my soul<br />I can say "It is well"<br /><br />Jesus has overcome </span> <span style=";font-family:georgia;font-size:130%;" ><br />And the grave is overwhelmed<br />The victory is won<br />He is risen from the dead<br /><br />And I will rise when He calls my name </span> <span style=";font-family:georgia;font-size:130%;" ><br />No more sorrow, no more pain<br />I will rise on eagles' wings<br />Before my God fall on my knees<br />And rise<br />I will rise<br /><br />And I hear the voice of many angels sing, </span> <span style=";font-family:georgia;font-size:130%;" ><br />"Worthy is the Lamb"<br />And I hear the cry of every longing heart,<br />"Worthy is the Lamb" </span><br /></div>Dykstrashttp://www.blogger.com/profile/00490149516314290697noreply@blogger.com0