tag:blogger.com,1999:blog-68057372889781941082024-03-13T07:03:52.921-05:00A Journey In Hope~Psalm 33:18-22~Anonymoushttp://www.blogger.com/profile/06324222570588635059noreply@blogger.comBlogger183125tag:blogger.com,1999:blog-6805737288978194108.post-53054148234605644762017-11-04T12:10:00.000-05:002017-11-04T13:50:26.351-05:00Eating ALL his food by mouth!! <div class="separator" style="clear: both; text-align: center;">
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Mr Boy is now eating ALLLLL his food by mouth without the aid of the feeding tube!!!!!</div>
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Let me start by saying, a HUGE thank you to all the people who have been steadfast in praying for Mr Boy all his life, and all the doctors who have performed surgeries, therapists who have spent countless hours working on this issue, and special needs moms who have given invaluable advice and support, and all the friends who have patiently listened to me lament about the tube. </div>
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1st grade school picture. Almost 7 years old! </div>
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Now a short recap of Mr Boy's feeding tube adventure most of you already know, and a lengthy description of the how he just reached the finish line!</div>
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Mr Boy had a feeding tube at birth until they discharged him from the NICU at 2.5 months old. Within a month he was back in the hospital due to weight loss and vomiting. He received an NJ-tube as a "temporary solution" which ended up being a 2 year solution. No one could ever figure out the problem despite forgoing my breast milk, and trying every specialty, allergy-free formula on the market.</div>
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Daddy built Mr Boy this cart for his feeding pump backpack because he was too little to wear it, but wanted to move around. </div>
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Mommy had to follow him around to make sure the tube didn't get stuck or pulled out. We were literally joined at the hip at times.</div>
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He continued to have severe reflux and vomited 5-10 times per day for years. Mommy developed ninja-like skills at catching vomit with her always handy wash cloths.</div>
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Finally at age two, Mr Boy received a G-tube, much easier to deal with than an NJ-tube.</div>
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Around age 3.5 I started feeding him a Blended diet (real whole foods in the blender) instead of specialty formula and his vomiting finally subsided. He was able to eat foods like crackers but was not able to chew and swallow veggies or meats.</div>
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In Preschool Mr Boy began eating all kinds of foods no matter the texture, but his appetite was not substantial enough to stop tube feeding. We tried ending feedings but he lost weight and did not consume enough calories on his own to sustain growth. We attributed this to his slow-moving system. </div>
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At age 5, a world renown Pediatric Surgeon, Dr Alberto Pena (whose career and books and medical progress I had been following for years), moved to Colorado and joined the Children's Hospital of Colorado. He discovered Mr Boy had a very large obstruction in his intestines, probably causing the lack of appetite and slow-moving system. He guessed it could have been there for years. He performed surgery to help fix the obstruction and damaged intestines, but knew it would still be a journey of healing afterwards. </div>
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The surgery was a success but despite the continued daily procedures we do to try and help heal the intestines, I still felt like Mr Boy's system was slow, preventing him from being hungry enough to ever eat on his own. He enjoyed eating but just wasn't hungry. I knew Mr. Boy would always be smaller than other kids, but I always hoped that if I just fed him well enough, maybe, just maybe I could force feed him enough to get him plump and that that would eventually convert into vertical growth as well. I allowed myself to carry all the pressure and stress of his growth. </div>
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This year has been particularly hard in that area, as the gap between the height of Mr Boy and his peers grows larger and larger, and as he is reaching 7 years old, is getting surpassed in height by 4 year olds. The pressure of my responsibility to keep him growing, continued to build. But one day this summer, Dr Pena, who is the Doctor who knows most well how Mr Boy's system operates and how it's slow and inhibiting his appetite, told me, "If I were you, I would stop feeding him in the tube and see what happens. You don't want to be feeding him forever." (I'm so grateful to Dr Pena for having the courage to say that to me.) I thought he, of all people would be confirming my suspicions that Mr Boy would never get off the tube, but instead he was wondering why I was still feeding him at all. </div>
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I was a little flabbergasted, but decided to give it another go. In my heart I knew it would not work, and I would at least prove it to Dr Pena, and then we could move on and i could finally resign myself to the truth. Or somehow it would work and we'd be off the tube forever. I figured it was a win/win for closure for me either way. But Mr Boy would lose weight in the process, precious weight I worked hard to pack on him. We all knew it would take several weeks for him to get used to not being tube fed, feel hungry and begin eating well enough to sustain growth if at all. </div>
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Mr Boy's GI doctor okayed the plan and in June, I stopped all feedings. I was on pins and needles, constantly encouraging him to eat and drink and watching him wither away. He lost 3 lbs, in all and all year he had been finally sustaining 40lbs, so moving back in to the 37lb range made me tense. </div>
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As you can imagine, we were wanting him to eat ANYTHING, so his diet also suffered. Suddenly he went from a healthy diet controlled by his mom via the tube, to consuming whatever he pleased. Pizza, french fries or waffles, for pretty much every meal. I was only concerned with the calories in the beginning: can Mr Boy, when offered anything and everything he would love to eat, be able to grow? If we could solve this question, then we could move on to working on healthy foods. </div>
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We confirmed around August, that he was no longer losing weight, but starting to gain back a little of what he lost, so the Doctors said, "keep doing what you're doing!" Since 1st grade started, we have been working on the healthy aspect of his diet now that we know he's got the appetite and his body has the capability!!! Bribery works wonders in that area! :) </div>
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Mr Boy is still not back up to 40lbs, but he's doing so well! And we will not have the tube removed for many years to come, just for giving his daily medicines and making it easier for future surgeries and illnesses. But life is so different now that we don't have to feed him through it! I was dreading 1st grade because it would be all-day and I had no idea how I would fit in all his tube feedings, but we solved that just in time! </div>
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I can't express how amazing it is to say it out loud, "Mr Boy is done with Tube feedings!" As it's been such a huge part of his life. His care in general is so much easier (and far less time consuming!) and he is such a happy kid. Thank you all again for your prayers and love throughout Mr Boy's journey.<br />
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I almost finished this post without remembering to acknowledge Lord's part in all this. I'll admit that I've spent more of this journey with my eyes on the raging seas around us, than on Jesus who has been in my boat with me all along. Half the time I've been swimming beside the boat just trying to stay alive, much less trusting in my Savior, beckoning me back into the boat. But despite my fickle nature, my Lord and Comforter has been holding me up when I couldn't float. He's been here all along, in the pain and hurts and in the celebrations and victories. So thank you Jesus for all your mercies!!!!<br />
Lamentations 3: 23-24 Great is his faithfulness;<br />
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his mercies begin afresh each morning.</div>
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<span class="reftext"></span>I say to myself, “The L<span class="smallcaps">ord</span> is my inheritance;</div>
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therefore, I will hope in him!”<br />
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Anonymoushttp://www.blogger.com/profile/06324222570588635059noreply@blogger.com0tag:blogger.com,1999:blog-6805737288978194108.post-19475532707887112982016-05-19T11:42:00.000-05:002016-05-19T17:19:03.187-05:00Eating Real Food By Mouth!! - Adventures in Tube FeedingMr. Boy had his last day of Preschool today and this year was no less incredbily life-changing as the last school year. From the very first day in August, he has been different. He started eating food!!!<br />
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A little reminder:<br />
When Mr Boy was 3 months old, he had severe reflux and was losing weight. The doctors gave him a feeding tube and that was that. For the first 2 years Mr Boy continued to projectile vomit his feeds an average of 10 times a day. We tried every specialty formula on the market to no avail. At age two we started a Blended diet of simply blending up real food and putting that in the tube and the vomiting immediately decreased to 5 times a day and for the next two years it decreased until last Spring (2015), when the vomiting completely ceased.<br />
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<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-1Zqqwk9jaXo/UG9JoCCsD7I/AAAAAAAABKY/hCOoGBjsTT0/s1600/IMG_1997.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://3.bp.blogspot.com/-1Zqqwk9jaXo/UG9JoCCsD7I/AAAAAAAABKY/hCOoGBjsTT0/s320/IMG_1997.jpg" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Wore this NG tube for two years<br />
taped to his face before getting G-tube<br />
directly in his stomach which is what<br />
he has now.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">He was hooked up 24 hours a day, so Dave made this platform so Mr Boy could drag his formula and pump around wherever he went since he was too small to carry it on his back.</td></tr>
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Years of vomiting and not wanting to swallow food for fear of vomiting, left him a little too scared to swallow solid foods. But August of this year, Mr Boy started his second year of preschool and happened to be in the one class that eats lunch during preschool. I was a little annoyed at first, because I feed Mr Boy at home in the tube anyway and now 30 minutes of his 2 hour 45 min preschool day would be wasted on a futile activity. But I was WRONG. It only took 2 weeks of sitting and watching his peers eat lunch while he sat there, to make him motivated enough to start eating like never before! Up until that point, he could only nibble and swallow things like crackers or "meltables," but he would not swallow things like veggies, meats, or really any "real" food with nutritional value. But this year, preschool motivated him to try new things and eat real food!!!<br />
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I have to take a moment to be real honest, and I know this will sound crazy, but despite how deeply I loathe that tube, part of me began to dread the final process of getting off the tube because I knew it would mean a lot of extra work. Even though logic tells me that once Mr Boy can chew and swallow solid foods, we could be done with the tube and let him thrive. But it's apparently not that easy. Since eating on his own, with me still giving tube feedings at night, he lost weight. He just does not have enough of an appetite to eat enough food on his own and grow, even though he can currently chew and swallow anything. So we are in a delicate dance… adding a little extra food through the tube after every meal, but not feeding him so much extra that he's too full to eat on his own. I love dancing, but this dance is tricky.<br />
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Several specialists have been working on the appetite issue this year with different drugs, routines, and ideas and Mr. Boy will be starting a Feeding group with other kids at the Children's Hospital of CO this summer.<br />
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As you can see, my neat and orderly way of feeding my child has been disrupted because this kid has the audacity to decide he's finally ready to eat. :) With 100% tube feeds, I could control everything! I could give him the finest, most nutritious foods and know that he's probably the healthiest kid on the block. I could control calories and know he is getting enough to grow. All of the sudden I have to struggle with those "normal mom" problems like getting their kids to eat their veggies. lol. I never fought that battle because I could shove them through his tube. Easy peasy. This tube way of life, although difficult the first few years, had finally become "normal" to me and a safe routine.<br />
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Althought I never, ever thought I would feel it, I was reluctant for Mr. Boy to eat! The Me-from-2-years-ago would slap the Me-of-today for saying such a stupid thing. But I like being in total control of his food! It feels safe. Now I have to sit by and watch my medically fragile child eat things like… chicken nuggets… french fries… ok, and that's pretty much all he's eating every day right now. Haha. But that's painful… oh so painful. :) But more than that, his appetite isn't "normal" so I still must feed him in the tube and guess at his calories so he continues to grow and doesnt fall too much behind. It is tressful at times when I feel responsible for his growth. All that being said, the immense JOY of being able to sit at a table with my son and have him eat what everyone else is eating, far outweighs my worries. AND, when I remember to lay my worries at the feet of Jesus and trust that He is watching over Mr. Boy and that He loves him even more than I do, then I can relax and know he's in the Lord's hands.<br />
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At this point I'm over my silly pity party and am thouroughly enjoying seeing Mr Boy try new things and eat "normally." Mr Boy will eventually eat <u>all</u> his food by mouth. And on that day, that glorious, blessed day, that the doctor decides to remove the tube and let that hole in Mr Boy's tummy close for good… we will certainly throw a party. But in the meantime, we will rest in the peace that only comes from the Lord (you know, the kind that surpassess all understanding) :) and enjoy this season of discovering new foods!<br />
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<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-m0-ZLMIZb20/Vz3omcNGlfI/AAAAAAAACdg/bFFDPktvR88-Hh2hM_JtwpmiZAuKWz8rACK4B/s1600/13231190_591653026794_1657684209_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="398" src="https://3.bp.blogspot.com/-m0-ZLMIZb20/Vz3omcNGlfI/AAAAAAAACdg/bFFDPktvR88-Hh2hM_JtwpmiZAuKWz8rACK4B/s400/13231190_591653026794_1657684209_n.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We are so grateful for this 2015-2016 school year and Mr. Boy's incredible teachers!</td></tr>
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Anonymoushttp://www.blogger.com/profile/06324222570588635059noreply@blogger.com0tag:blogger.com,1999:blog-6805737288978194108.post-19557591715117525362016-03-30T14:01:00.000-05:002016-03-30T21:24:26.554-05:00When Your Child's Identity is Stolen <div style="text-align: left;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="background-color: #93c47d; line-height: 19px;">Something happened about 2 years ago now, but I'm just now getting around to talking about it. It was creepy, but I realize talking about it could help others. Also, it is the reason I have not posted much in the past 2 years. I have edited all past posts on this blog with a nickname for our son "Mr. Boy" (as my husband lovingly refers to him) and deleted some posts, as well as some information. It's easy to over-share when you're griveing and want sympathy and attention, but this is Mr. Boy's story to tell, so I'll be posting fewer details about him and more general updates. </span><br /><span style="line-height: 19px;"><br /></span><span style="background-color: #93c47d; line-height: 19px;">Here is the story: I am in a few private groups on Facebook created just for people with Mr. Boy's condition. They have been a major source of comfort, widsom and friendship throughout the years. One day I noticed one of the mothers in this group, "Shonaleah Gillen" had my own son's picture as her profile pic. It appeared she was claiming him as her child. I noticed her in another one of the groups as well when she introduced herself. She had a different fb page just for her supposed son named "Ashton," called "Buddy-Ashton My-Miracle" where all the pictures were of my son, taken from this blog. </span><span style="background-color: #93c47d; line-height: 19px;"> She even has a blog</span><span style="background-color: #93c47d; line-height: 19px;"> where she claims to have a son "Ashton" (creepy right?) with his condition and took bits and peices of our story mixing it with fiction, with my son's pictures posted there as well. It was like reading a middle schooler's plagarized essay, knowing it was copied and the way they copied it shows they have no idea what they are talking about? Like that. It was extremely sickening and scary to see. Legally, unless she is asking people for donations in her fake son's name... there isn't much I could force her to do. </span><br /><span style="line-height: 19px;"><br /></span><span style="background-color: #93c47d; line-height: 19px;">But this is what I did do: I contacted the administrators of the Facebook groups, to have her removed. I sent her firm messages asking her to remove my son's pictures on both her fb pages and on her blog. I flagged her pages on facebook. (I couldn't take any action against her wordpress blog because there were no copyright infringments). I called our local FBI office and they actually put me through to an agent who took all the info down and sent it to their cyber crimes unit so that they can make sure she isn't scamming people with my son or anyone else's children's pictures and story. </span><span style="background-color: #93c47d; line-height: 19px;">Stealing my son's story and identidy just to get sympathy is sad and sickening, but I really wanted to make sure she wasn't trying to raise donations for her fake child, scamming people online. </span><br /><span style="line-height: 19px;"><br /></span><span style="background-color: #93c47d; line-height: 19px;">Update: The FBI looked into it, and will watch her so they can catch her if she is or ever does start scamming people. She was removed from our private FB groups, her "Buddy-Ashton My Mircale" facebook page is gone, her personal FB page is gone, but unfortunately the blog remains up, with my son's pictures. </span><br /><span style="line-height: 19px;"><br /></span><span style="background-color: #93c47d; line-height: 19px;">It was clear she is a sad woman seeking sympathy online for having a disabled child. I get it. the sympathy and attention does feel good when you're depressed and could get addicting. Please join me in prayer for this woman, as it's clear there are deeper issues at play in her life. Someone who would take another child's identity as their own and seek false sympathy, must have been something horrible to get to that place. I hold no ill-will towards her. </span><span style="background-color: #93c47d; line-height: 24px;">For our struggle is not against flesh and blood,</span><span class="crossreference" data-cr="#cen-NIV-29350P" data-link="(<a href="#cen-NIV-29350P" title="See cross-reference P">P</a>)" style="background-color: #93c47d; box-sizing: border-box; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span><span style="background-color: #93c47d; line-height: 24px;"> but against the rulers, against the authorities,</span><span class="crossreference" data-cr="#cen-NIV-29350Q" data-link="(<a href="#cen-NIV-29350Q" title="See cross-reference Q">Q</a>)" style="background-color: #93c47d; box-sizing: border-box; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span><span style="background-color: #93c47d; line-height: 24px;"> against the powers</span><span class="crossreference" data-cr="#cen-NIV-29350R" data-link="(<a href="#cen-NIV-29350R" title="See cross-reference R">R</a>)" style="background-color: #93c47d; box-sizing: border-box; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span><span style="background-color: #93c47d; line-height: 24px;"> of this dark world and against the spiritual forces of evil in the heavenly realms. -Ephesians 6:12</span><br /><span style="line-height: 19px;"><br /></span><span style="background-color: #93c47d; line-height: 19px;">This is a sad reality of putting our children's stories online for the public to see. It is hard to balance privacy and being a help to others like us, but please let this be a reminder to all of us that the internet is a scary place, so think twice before you post something about your child. They may wish you never shared some things when they are old enough to hold us accountable for the things we say about them online. Even our private groups are not immune to crazy people... let us tread lightly and write wisely about our children. I love you all, and hope this doesn't happen again to anyone else! </span></span></div>
Anonymoushttp://www.blogger.com/profile/06324222570588635059noreply@blogger.com2tag:blogger.com,1999:blog-6805737288978194108.post-90387221872292598862015-06-05T19:50:00.001-05:002016-03-19T14:43:57.155-05:00PTSD and Dizziness -How we recently discovered Mr Boy feels dizzy and how far he has come.It's a bit ironic that one of my last posts was entitled "Cracking the Code of Fear." I boasted that we were finally figuring Mr Boy out and conquering his fears and need for control stemming from his traumatic/painful medical events which rendered him terrifyingly out of control. But what we learned then, compared to the facts to which we have just become enlightened, pailes in comparion.<br />
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In March, David "randomly"met or to put it more accurately, "divinely" met a PTSD therapist at work. They chatted about Mr Boy and Dave mentioned that when Mr Boy gets upset about things, he says they are, "Spinny (like spinning)." She replied, "oh yeah, he feels vertigo." This realization blew our minds. The first thing we did when Dave got home from work was simply ask the kid, "When you say things are 'spinny' is it because you are feeling dizzy?" His answer of "Yes, spinny and dizzy like a carousel," broke my heart. We had recently been brushing off his "spinny" comments and telling him, "No…. that thing is not spinning. You are fine, it is not hurting you." A flood of apologies and hugs followed.<br />
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He never had the language to explain it all to us, and only in the past few months had he been using the term "spinny" so we never put it all together.<br />
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After 2 years and LOTS of therapy, medicine and work on our part at painstakingly trying to desensitize Mr Boy to his fears, we finally discovered just how valid those fears truly were. Sure, we always believed that the fears originated from the traumatic medical procedures and that he was grapsing to control all the unpredictable things in his environment (specifically things that blow in the wind or rock, fly or run around), in an effort to feel safe after so many moments being completely out-of-control while having painful things done to him. And on some level this is still accurate, but suddenly a light has been cast over Mr Boy's inner-workings, giving us a better understanding of his 'fears.'<br />
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As soon as we found out about the dizziness, we got Mr Boy into mental health therapy as well as Neuropathy, to rule out any inner-ear issues and as expected, he does not have any. The Neuropathist (who is on sabatical but came in specifically just to work with Mr Boy as she is the child expert), explained his dizziness this way: Until the age of 15, our brains and inner ears are still learning to work together to balance us automatically. As children, a lot of the information our brain uses to balance us, comes from what we see or how we see our bodies within the space around us. In Mr Boy's case, because his body is naturally off balance with his shorter leg/smaller foot, and scoliosis, he already has to tilt his head to be balanced and his brain has extra work to do. When Mr Boy would become upset, in a hypersensetive state, his brain would have a hard time processing the information needed to keep him balanced and if a curtain were to blow in the wind (the very first trigger he ever had) or a noise (not sure how it works, but random noises are triggers as well), this would be enough to make his brain think he was also blowing/swaying, and have a hard time balancing. Thus he would feel dizzy and this would increase the terror of the moment.<br />
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It would also increase his nausea. When we switched Mr Boy to a blended diet and got him off the formula 2 years ago, his vomiting decreased from 5 times a day to about once a day, but that once-a-day vomiting still persisted. I knew it didn't have anything to do with what he was eating, but everything to do with his emotions. I now feel quite justified in my thinking. <br />
Anxiety and dizziness ---> nausea and vomiting.<br />
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It all makes so much sense now. It makes sense why he wouldn't let me dance… why he wouldn't let me hold him during his panic attacks (because I rocked back and forth)… or why he would beg for us to stop the curtins from blowing from the air conditioner. It hurts so much to know that Mr Boy was suffering in this way for 2 years and we were so clueless. There is so much more I could have done or said or comforted, had I known. But in the Lord's redeeming love, He has made it known now, enabling him to find more healing and process all this out with us. It has certainly lifted a burden off all of us. Now Mr Boy is vindicated and we can be much more sensitive to his feelings and needs.<br />
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At least once a day Mr Boy will still say, "mom, take off your dangling earrings, they are spinny," but he has recently clarified that statement slightly with, "I think they will make me feel dizzy." And there is no more fear in his voice when saying it because he knows I am fully supportive. Before, I would say, "You are ok, they are fine, they won't hurt you." But that wasn't the point and I didn't understand. He didn't have the language to defend himself. But now he doesn't have to.<br />
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Since having this new knowledge, I have personally only seen him feel dizzy (and it was obviously terrifying) twice and it was when he was in a very emotional state. All his other daily worries are because he remembers the dizzy feeling, knows the things that triggered his dizziness in the past, and is afraid those items will make him feel dizzy once more.<br />
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With advice from the therapists, we are helping him work through this by talking it out which helps immensely. When neccessary, we give him firm pressure on his sholders with our hands and plant his feet firmly on the ground to give his brain extra physical input to know he's not spinning. And we give him a safe place to go if he is nervous. His room is his safe spot. For instance when Skittle's baby toys make noise as she randomly hits them, he sometimes doesn't like it and thinks it might make him feel dizzy. But we don't want to ban Skittle from playing with musical toys, so Mr Boy excuses himself to go lay down on his bed until he feels better and can come back and play. Last week he started going into the pantry as a safe place as well. But we already rarely need to utilize these techniques. He has matured so fast it's crazy. And then he runs around pretending to fart on me and I remember he's a kid. :)<br />
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Mr Boy has made so many incredible leaps and bounds in conquering the fear of his past triggers since we have known about the dizziness and become more supportive.<br />
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One HUGE blessing in all this has been Mr Boy's decreased vomiting. He vomits maybe twice a month since we have learned all this. That was 5-10 times a day for this first 2 years of his life, then 1-3 times a day for 2 years and now virtually no throwing up at all. He is so happy and content with life and his surroundings that his anxiety is almost non-existent and thus his vomiting is almost non-existent.<br />
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After only 3 visits, Mr Boy's mental health therapist actually told us we didnt need to keep coming. And after only 2 visits, the Neuropathist told us we only need to see them twice a year to check-in. Mr Boy has almost no negative affects from his trauma that would be treatable in therapy. They said therapy can only do so much and all the tools they would teach us to help Mr Boy on a daily basis at home, we are already employing. I guess I needed the therapy process so see how great he's been doing! One year ago today I would never have dreamed of such a blog post. But for the past few months Mr Boy has come a long way toward complete PTSD healing. We continue to pray that there is no recurrence of issues later on in life, but will be poised to take them head-on with this new knowledge and with an army of prayer warriors behind him. Praise the Lord!<br />
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Through processing this all out with Mr Boy, he has begun to bravely go where he has not ventured before and play with things which were dizzying triggers in the past. All these new things in the past few months: </div>
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He now bathes every day!!! And last week I was allowed to add bubbles! Huge steps!!</div>
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Water has been such a HUGE obstacle his entire life and now he's a tadpole.</div>
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In our kiddie pool in the backyard. We had this pool 2 years and he is finally happy to get in it!</div>
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In physical therapy 3 weeks ago, I mentioned to his PT that the only thing Mr Boy still would not do, is swing. He just knew it would make him feel dizzy so he refused. His PT took that as a challenge and asked Mr Boy to hop on this swing. Mr Boy was scared and tense, but agreed to get on as long as he didn't move it too much. After a few minutes, Mr Boy said, "Hey! I don't feel dizzy! I want to go faster! Mom, I want ride a swing everyday!" </div>
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On our way out of therapy that day, the PT also got Mr Boy to try out a tire swing, the epitome of dizziness. Mr Boy said, "I feel a little dizzy, but the good kind of dizzy." Amazing!</div>
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So naturally, the first thing we did was go to a park and swing!</div>
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I could go on and on and on and on about all the new things he is able to do and all the triggers which have been rendered harmless. The simple fact that he went to Disney world and enjoyed it with no fears, is a true testament to how far he has come. Even today, Mr Boy told me we should go to his playroom and put all the batteries back into his noisy toys, and we had a dance party!</div>
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We always thought Mr Boy was just going to be the very anxious one in the family, and carry on the tradition of scaredy cats in our family line (me included), but this is not the case. He is the most courageous boy I have ever met and will always be my inspiration. The Lord bessed him with bravery, at which I can only marvel. We could not be more thankful to the Lord for his mercies. It feels like we literally got our son back.</div>
Anonymoushttp://www.blogger.com/profile/06324222570588635059noreply@blogger.com2tag:blogger.com,1999:blog-6805737288978194108.post-47611763534885924542015-05-20T00:04:00.001-05:002016-03-19T13:42:21.314-05:00The Blessing of PreschoolAside from our move to Colorado, Preschool has been the biggest blessing in Mr Boy's life. Very quickly, Preshcool succeeded in "curing" him of many of his fears outside of the home. But little by little, the results slipped into our home as well. Woo Hoo! Felt like a rainbow of hope and joy, which we could see outside our window... suddenly burst into our living room and illuminate our lives. :) Seriously. Mr Boy went from being nervous and vomiting when other kids approached, to being completely at ease in their presence. He used to have panic attacks on the way to toddler music class or play groups where he knew I would not even leave his side. Thus prescool looked like an insurmountable mountain between Mr Boy and a successful elementary school career. Thankfully Mr Boy qualified for therapies in school, based almost soley on his PTSD symptoms and thus had very helpful therapists by his side to help him climb to the summit of this preschool mountain.<br />
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Ahem, Ahem... we have also heard he's kind of a ladies man. Holding hands with one girl one week and another girl the next. Slow down boy!<br />
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Mr Boy has a newfound confidence and independence. I never thought I'd be able to say "Mr Boy" and "independent" in the same sentence. Before preschool I couldn't even go into another room in our home, without my sweet lil boy screaming, "Mommy! Where are you?!?!" And running to be by my side so he was not alone.<br />
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We are rejoicing and praising the Lord for moments like these. It took months and months, but he finally joined in with the daily end-of-day dancing. Until recently, he would cry on the way to school because he was afraid the kids would dance and he would not like all the motion. But here he is dancing!</div>
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<span style="text-align: start;">We are so proud of this little man, and so blessed to have Mr Boy in this Preschool with the therapies he has. As this school year comes to an end this week, we are already looking forward to Mr Boy's second year of preschool and excited for all the Lord has is store for his life.</span></div>
Anonymoushttp://www.blogger.com/profile/06324222570588635059noreply@blogger.com0tag:blogger.com,1999:blog-6805737288978194108.post-83042816312553790792015-05-08T19:21:00.000-05:002016-03-19T13:39:44.943-05:00The Club Foot Journey<div class="separator" style="clear: both; text-align: center;">
Mr Boy's club foot was repaired at birth, but it recurred slightly by the time we moved, so last October we embarked on another season of "fixes." We've been told to anticipate the possiblity of more of these seasons in the future, but we are resting in the hope that will not be the case. </div>
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Mr Boy had 3 casts over 6 weeks, each one turning his foot a little more outward.</div>
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After the casts, on December 16, 2014, Mr Boy had surgery to perform a tendon transfer, (drilling a hole through his foot bone and pulling one of his tendons through it to the other side so his foot will pull the other direction) and an achilles tendon lengthening to give him more range. </div>
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<tr><td class="tr-caption" style="font-size: 13px;">Prepped and ready for surgery</td></tr>
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<tr><td class="tr-caption" style="font-size: 13px;">2 more casts after the surgery to facilitate recovery</td></tr>
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8 weeks later, Mr Boy got his permenant orthodic which he will wear for the forseeable future to prevent his foot from turning back inward:</div>
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<tr><td class="tr-caption" style="text-align: center;">Superman design</td></tr>
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Mr Boy started Physical Therapy shortly after his foot healed from surgery. </div>
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<tr><td class="tr-caption" style="font-size: 13px; text-align: center;">Balance beam</td></tr>
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<tr><td class="tr-caption" style="font-size: 13px; text-align: center;">Climbing the ladder to get toy cars hidden in the curtain</td></tr>
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<tr><td class="tr-caption" style="font-size: 13px;">We put a bouncy house in the basement, which has been very helpful in strengthening Mr Boy's muscles and balance.<br />
It was purchsed strictly for theraputic reasons of course. :) </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Practicing his therapy exercises at home</td></tr>
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<span style="text-align: center;">Here, Mr Boy is practicing his therapy exercises (using a 2x4 as a balance beam and a cutting board on top of a pillow as a balance board, on which he throws toys into the center of the boppy pillow)</span><br />
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<tr><td class="tr-caption" style="font-size: 13px; text-align: center;">Finally conquered the chain ladder! </td></tr>
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<tr><td class="tr-caption" style="font-size: 13px;">Newfound bravery and confidence</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Mr Boy on the balance beam at Gymnastics</td></tr>
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Mr Boy also started Gymnastics, which he loves and will play soccer this summer!<br />
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All this therapy has been doing wonders for Mr Boy's confidence, physical strength and balance. It's been exciting to see him take charge of his own therapy and see his pride in his own accomplishments. </div>
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Anonymoushttp://www.blogger.com/profile/06324222570588635059noreply@blogger.com0tag:blogger.com,1999:blog-6805737288978194108.post-72568852571271524212014-12-08T14:35:00.000-06:002016-03-19T13:38:08.688-05:00Cracking the code of FEAR We are slowly but surely figuring this kid out. He's got some pretty interesting fears, but as he gets older and more reasonable, I can sometimes reason with him... at least when the fears are, well... somewhat reasonable. :) All his fears root back to control. When Mr Boy feels like a situation or thing is unpreictable or uncontrollable, he gets upset. This traces back to all the times he was held down in the hospital and had traumatic procedures done to him outside of his control.<br />
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Now I know we told you that when we moved to Colorado, all Mr Boy's fears melted away. Well it seemed as such. But when Skittle was born, Mr Boy lost a lil sense of control and some fears came flooding back. They were still no where near as bad as before, but nevertheless, some fears returned.<br />
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One fear that has never ceased to persist, is that of water. I tried using reverse psycology on him all summer to desensitize him to his fear of water. I would take him to the fountains at the outdoor mall and say we are just going to watch... not get wet. That took the pressure off, gave him back the control and allowed him to choose when he wanted to get wet. We went somewhere with water at least once a week. I also set up a pool in the backyard "just to clean it off." Here is a video of how that went:<br />
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Although we made huge strides toward liking water this summer, Mr Boy still breaks down in tears and starts to throw up at the thought of a bath (we sponge bathe only) and sometimes even the thought of a clear cup where he can see the water moving - wont touch it. Twice in his life we successfully got him in a bath only to have him refuse and panic the next time. Last week however, he saw his sister enjoying a bath and asked if he could get into the baby tub. I said "YES!" as any mother who has never been able to actually bathe her child would… and quickly tossed Skittle from the infant tub (I laid her gently down but 'tossed' is more exciting), and got Mr Boy squeezed in before he could change his mind. He enjoyed a few baths while squished into the infant tub and now will only play in the baby tub from the side of the tub, where he is safe and dry, but even that is still a gain. "No bubbles and no water in the big tub," as Mr Boy says, but at least he is playing in water with his hands in a baby bath. Win.<br />
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But we have also gained a lot of ground in other areas:<br />
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-At some point this summer, Mr Boy was frightened while playing on his ipad, which he has loved since he was 2, at which point he decided it was evil and didn't touch it for 2 months. I had an epiphany one day and suddenly remembered the incident which brought about this new fear. He had an app open on the ipad which played music in the background. Mr Boy was ignoring it and playing with cars on the floor when he noticed the screen was black (it had gone into sleep mode) but the music was still playing. (This was unpredictable and seemingly out of his control) That freaked him out and he was never to touch the ipad again. I recounted this incident to him and told him "This is why you are scared of it" (he was never able to tell me why he was afraid of it before). I said, "Let me fix it for you," and proceeded to turn the ipad off and on again, "fixing" the problem and then explained why the ipad acted that way, and bam! He has played with it every day since.<br />
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<tr><td class="tr-caption" style="text-align: center;">Basement Playroom</td></tr>
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<a href="http://2.bp.blogspot.com/-0E8DB-T-TsY/VIYIHi7DFSI/AAAAAAAACSw/djl_4qCcWyU/s1600/photo%2B1.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="150" src="https://2.bp.blogspot.com/-0E8DB-T-TsY/VIYIHi7DFSI/AAAAAAAACSw/djl_4qCcWyU/s1600/photo%2B1.JPG" width="200" /></a>-Also, since we moved into our home in May, Mr Boy has never played in our basement playroom. All his toys are in there, it's finished and has tons of natural light, so it's not your typical scary basement scenario. Regardless, I just couldn't get him to play with me down there or mention it with him starting to throw up or cry. However, a few weeks ago, I had another epiphany: He got scared once when we were down there for a few minutes gathering toys to bring upstairs because one of the baskets of toys got bumped and a toy started making noise. (This was again, unpredictable and seemingly out of his control). So he and I ceremoniously took the batteries out of each and every toy in the basement and bam! Now he loves it down there!<br />
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-Mr Boy also spent the summer in our living room or front yard. He very much disliked the thought of going in the back yard and would throw up (he's an axious vomitter, as kids who suffer from severe reflux can be) and cry if I mentioned it because "there were bugs." This he told me this straight up. We all know there are just as many bugs in the front yard as in the back, but some bug scared him in the backyard, so it was off limits, regardless of logic. This was very sad for me because part of the reason we bought the home was because of the large backyard. We have a tiny front yard, and I think the neighbors were starting to think we were "those weird neighbors" who were always out front. Once fall hit, I was able to honestly tell him that as it got cooler, there wouldn't be so many bugs in the backyard, and bam! Now we play back there everyday!<br />
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-And at preschool, Mr Boy never played on the playground. He would walk around on the basketball court while all the other kids played on the playset on the playground. He wouldn't tell me why. But one day last week (3 months into school) he finally walked up onto the playground and went down the slide! Slides have always been a deterrent for him, but he overcame!<br />
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So although he still has some funny fears, at least he is finally able to be reasoned with to a certain degree. He is better able to process his fears and see that they are unnessasary or at least put them to words. This is a new refreshing season. Thanking the Lord for every victory and "epiphany" and for giving us wisdom and insight into Mr Boy's heart.Anonymoushttp://www.blogger.com/profile/06324222570588635059noreply@blogger.com0tag:blogger.com,1999:blog-6805737288978194108.post-16860037716271931222014-12-03T15:16:00.000-06:002016-03-19T13:34:24.982-05:00New Colorado DoctorsIt took nearly 8 months, endless medical history request forms, 100s of pages of New Patient documents, and countless hours on the phone with our insurance, hospital appointment schedulers and home medical suppliers, but we finally got acquainted with all Mr Boy's new doctors here in Colorado. Here is a list of all those doctors and their thoughts on the future:<br />
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<span class="Apple-tab-span" style="white-space: pre;">1. </span><b>Pediatrician</b>- Partners in Pediatrics</div>
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<span class="Apple-tab-span" style="white-space: pre;">2. </span><b>Gastroenterology</b> - Jason Soden, Children's Hospital Colorado</div>
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<span class="Apple-tab-span" style="white-space: pre;">3. </span><b>General Surgery</b>- Rebecca Jacobsen, Children's Hospital Colorado </div>
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<span class="Apple-tab-span" style="white-space: pre;">4. </span><b>Orthopedics</b> - Gaia Georgopoulos, Children's Hospital Colorado<br />
5. <b>Orthopedics -</b> Travis Heare - Children's Hospital Colorado</div>
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<span class="Apple-tab-span" style="white-space: pre;">6. </span><b>Neurosurgery</b> - Todd Hankinson, Children's Hospital Colorado</div>
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<span style="white-space: pre;">7. </span><b>Urology</b> - Duncan Wilcox, Children's Hospital Colorado</div>
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<span class="Apple-tab-span" style="white-space: pre;">8. </span><b>Bowel Management</b> - John Bealer <span class="Apple-tab-span" style="white-space: pre;"> </span>Children's Hospital Colorado<br />
<span class="Apple-tab-span" style="white-space: pre;">9. </span><b>Pediatric Oral Feeding Clinic</b> at Children's Hospital Colorado</div>
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Medically, Mr Boy is doing AMAZINGLY WELL. All his new doctors said the same thing…"He is just doing so well for a child with his condition." They were all blown away by his health. Praise the Lord!!<br />
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Anonymoushttp://www.blogger.com/profile/06324222570588635059noreply@blogger.com0tag:blogger.com,1999:blog-6805737288978194108.post-52452740930807874452014-10-06T16:28:00.000-05:002016-03-19T13:22:32.126-05:00Re-Casting for the Club Foot<div class="separator" style="clear: both; text-align: center;">
As you already know, Mr Boy was born with a club foot:</div>
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A few weeks after birth, his Orthopedic surgeon began casting his foot with a new cast every week for 6 weeks:</div>
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<a href="http://1.bp.blogspot.com/-LdIPuO0eKdU/TQMGzAEz8nI/AAAAAAAAABs/nEg7mL7fhqs/s1600/cast.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://1.bp.blogspot.com/-LdIPuO0eKdU/TQMGzAEz8nI/AAAAAAAAABs/nEg7mL7fhqs/s1600/cast.JPG" width="400" /></a></div>
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After the 6 weeks, the foot looked like this:</div>
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After the casting, he was supposed to wear this Ponseti Boots and Brace set for 3 months 24/7, to keep the foot in place.</div>
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<a href="http://1.bp.blogspot.com/-DZ5IHazmn4o/TTyt_gYDINI/AAAAAAAAAHk/eQD1X884ctQ/s1600/IMG_5080.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://1.bp.blogspot.com/-DZ5IHazmn4o/TTyt_gYDINI/AAAAAAAAAHk/eQD1X884ctQ/s1600/IMG_5080.JPG" width="320" /></a></div>
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But… Mr Boy had a separate surgery at the same time and since he looked so pitiful, we didn't make him wear the boots and brace for the full week of recovery. </div>
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<a href="http://4.bp.blogspot.com/-fIyt3QiV8NY/TUJQE2TsFUI/AAAAAAAAAIY/LJ-6-vuwZcs/s1600/IMG_5125.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://4.bp.blogspot.com/-fIyt3QiV8NY/TUJQE2TsFUI/AAAAAAAAAIY/LJ-6-vuwZcs/s1600/IMG_5125.JPG" width="320" /></a></div>
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Unfortunately, our decision to forgo the brace for one week, caused his foot to bend back enough to make the Doctor re-cast his foot again. :( </div>
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After this second set of casts, Mr Boy wore the boots and brace faithfully 3 months straight and then nightly for years while wearing a brace during the day. He still wears his shoe orthodic today.<br />
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When we met our Orthodepic Doctor here in Denver in June, she told us the foot was still not fully corrected and that Mr Boy would need another series of casts (a new cast every 2 weeks for 6 weeks total). She offered to start casting that day, but I chose to let Mr Boy finish out his summer and start preschool before she began. Plus, it's always nice to prepare your child for something so big. We watched lots of youtube videos to prepare him. </td></tr>
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<span style="font-size: small;">On his final day with both legs, we went to the circus!</span></td></tr>
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<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-9kgxnokxMOw/VDL9LFB5VlI/AAAAAAAACRI/YvWCjnla-qU/s1600/IMG_3874.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://2.bp.blogspot.com/-9kgxnokxMOw/VDL9LFB5VlI/AAAAAAAACRI/YvWCjnla-qU/s1600/IMG_3874.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">Ringling Brothers Barnum and Bailey: Legends</span></td></tr>
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<a href="http://1.bp.blogspot.com/-L5f0Tv2ygAE/VDL9NDUP9II/AAAAAAAACRQ/cOyoSxPPk-A/s1600/IMG_3877.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://1.bp.blogspot.com/-L5f0Tv2ygAE/VDL9NDUP9II/AAAAAAAACRQ/cOyoSxPPk-A/s1600/IMG_3877.JPG" width="240" /></a><a href="http://1.bp.blogspot.com/-Eq_7vu-oBVk/VDL9Ol4kADI/AAAAAAAACRY/slEfSePKWbM/s1600/IMG_3885.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://1.bp.blogspot.com/-Eq_7vu-oBVk/VDL9Ol4kADI/AAAAAAAACRY/slEfSePKWbM/s1600/IMG_3885.JPG" width="240" /></a></div>
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Mr Boy loved it!! With all his sensory issues and fears, this was such an accomplishment! A few months ago this would not have been possible. </div>
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<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-sc26c9E04qg/VDL9PL0_SaI/AAAAAAAACRc/NgoiWrfWzt8/s1600/IMG_3900.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://3.bp.blogspot.com/-sc26c9E04qg/VDL9PL0_SaI/AAAAAAAACRc/NgoiWrfWzt8/s1600/IMG_3900.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">One last bike ride to the park!</span></td></tr>
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And finally today arrived:</div>
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<a href="http://2.bp.blogspot.com/-1MipFg2a9WQ/VDL9PrzmsVI/AAAAAAAACRk/AHnPcnkzXJY/s1600/IMG_3903.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://2.bp.blogspot.com/-1MipFg2a9WQ/VDL9PrzmsVI/AAAAAAAACRk/AHnPcnkzXJY/s1600/IMG_3903.JPG" width="240" /></a></div>
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Mr Boy was sooooo calm and excited for his cast becasue he picked out "bright green."</div>
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We are so incredibly proud of our brave boy! Mr Boy is blowing us away more and more every day with his newfound confidence and bravery. Praise the Lord for all His glorious mercies!!<br />
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Anonymoushttp://www.blogger.com/profile/06324222570588635059noreply@blogger.com1tag:blogger.com,1999:blog-6805737288978194108.post-12025419543167191632014-10-02T09:06:00.002-05:002016-03-19T14:42:13.001-05:00New House, New Baby and Preschool! <div class="separator" style="clear: both; text-align: center;">
I uninentionally took a break from the blog because I kind of forgot about it! So many great changes were happening in our family, that I was more consumed with experiencing life than writing about it. When I did think about it, it overwhelmed me because sooo much was happening! So I will give a condensed recap of the past half year here. I will elaborate in the next few weeks on a few of these topics, but wanted to get this lil summary out before Monday, when Mr Boy will be getting a cast on his right foot and leg. Details on the reasons for this cast coming Monday. </div>
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<b>After leaving South Dakota, we spent 3 months in David's parent's home before purchasing a new house of our own in Aurora, Colorado. </b><br />
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<a href="http://1.bp.blogspot.com/-OwpB2i8Snr0/VCohqAUPYpI/AAAAAAAACLw/KKEwUQKM7XE/s1600/IMG_2084.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://1.bp.blogspot.com/-OwpB2i8Snr0/VCohqAUPYpI/AAAAAAAACLw/KKEwUQKM7XE/s1600/IMG_2084.jpg" width="300" /></a></div>
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<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-t4wcXV6OOI0/VCoiLgaLBMI/AAAAAAAACL8/qzeANtu7reQ/s1600/DSC04736.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="225" src="https://2.bp.blogspot.com/-t4wcXV6OOI0/VCoiLgaLBMI/AAAAAAAACL8/qzeANtu7reQ/s1600/DSC04736.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">View from our backyard</span></td></tr>
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<b>One month after closing on our house, Mr Boy became a big brother when I birthed this amazing lil thing:</b><br />
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<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-niyadwV3wvo/VCxp6foqwUI/AAAAAAAACMM/fk04Jf7Gngw/s1600/IMG_0737.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://2.bp.blogspot.com/-niyadwV3wvo/VCxp6foqwUI/AAAAAAAACMM/fk04Jf7Gngw/s1600/IMG_0737.jpg" width="285" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">"Skittle" - Born June 14, 2014 - 4lbs 13oz</span></td></tr>
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<a href="http://2.bp.blogspot.com/-axEGWAk_zW0/VCxqFPxRLaI/AAAAAAAACNs/mB9IBKKIqOQ/s1600/IMG_3477.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://2.bp.blogspot.com/-axEGWAk_zW0/VCxqFPxRLaI/AAAAAAAACNs/mB9IBKKIqOQ/s1600/IMG_3477.JPG" width="213" /></a><a href="http://4.bp.blogspot.com/-RSkJZwlb_oQ/VCxqD6aWNnI/AAAAAAAACNU/XepXNYB2Bd4/s1600/IMG_3138.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://4.bp.blogspot.com/-RSkJZwlb_oQ/VCxqD6aWNnI/AAAAAAAACNU/XepXNYB2Bd4/s1600/IMG_3138.jpg" width="320" /></a></div>
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<a href="http://2.bp.blogspot.com/-MBwpiVOY3Xg/VC1VKu3T_cI/AAAAAAAACQU/mGtsRYNEKLo/s1600/photo%2B5.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="https://2.bp.blogspot.com/-MBwpiVOY3Xg/VC1VKu3T_cI/AAAAAAAACQU/mGtsRYNEKLo/s1600/photo%2B5.JPG" width="320" /></a><a href="http://1.bp.blogspot.com/-M-xIVc7v8w0/VC1VEozL58I/AAAAAAAACOw/RVJFToeNRFU/s1600/photo%2B1-3.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://1.bp.blogspot.com/-M-xIVc7v8w0/VC1VEozL58I/AAAAAAAACOw/RVJFToeNRFU/s1600/photo%2B1-3.JPG" width="240" /></a></div>
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<a href="http://1.bp.blogspot.com/-wKiuVREhX9Q/VCxqG3XtqII/AAAAAAAACN8/g-5fuKMFYls/s1600/IMG_3428.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://1.bp.blogspot.com/-wKiuVREhX9Q/VCxqG3XtqII/AAAAAAAACN8/g-5fuKMFYls/s1600/IMG_3428.jpg" width="240" /></a><a href="http://1.bp.blogspot.com/-U96BGx1mmeQ/VCxqAgqZSRI/AAAAAAAACNA/OKEJbLheajQ/s1600/IMG_3058.jpg" imageanchor="1"><img border="0" height="320" src="https://1.bp.blogspot.com/-U96BGx1mmeQ/VCxqAgqZSRI/AAAAAAAACNA/OKEJbLheajQ/s1600/IMG_3058.jpg" width="240" /></a></div>
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Can you tell Mr Boy loves her? :) He is an amazing big brother!</div>
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<b>And after a summer filled with exciting adventures...</b><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-aCbqNZpvCew/VCxp9F5_dPI/AAAAAAAACMg/SqpNHQmGRM0/s1600/IMG_2795.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://3.bp.blogspot.com/-aCbqNZpvCew/VCxp9F5_dPI/AAAAAAAACMg/SqpNHQmGRM0/s1600/IMG_2795.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">Getting into a pool for the first time!!!</span></td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-lNyfthFkv6U/VCxqIkdqT0I/AAAAAAAACOM/pPly726vqIk/s1600/IMG_3596.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://3.bp.blogspot.com/-lNyfthFkv6U/VCxqIkdqT0I/AAAAAAAACOM/pPly726vqIk/s1600/IMG_3596.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">Learning to ride his tricicle for the first time! </span></td></tr>
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<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-EPC464oFs1U/VCxr6NT4SrI/AAAAAAAACOc/KH_X8QX-Eyk/s1600/IMG_2953.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://3.bp.blogspot.com/-EPC464oFs1U/VCxr6NT4SrI/AAAAAAAACOc/KH_X8QX-Eyk/s1600/IMG_2953.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">Annual Family Camping Trip</span></td></tr>
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<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-UiqfITM9D48/VCxr5ikMXeI/AAAAAAAACOY/eQkvui07HBo/s1600/IMG_2417.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://4.bp.blogspot.com/-UiqfITM9D48/VCxr5ikMXeI/AAAAAAAACOY/eQkvui07HBo/s1600/IMG_2417.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">lots and lots of this</span></td></tr>
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<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-G7901lao2sk/VC1VGF1HNoI/AAAAAAAACPI/_nGNGKPMaH4/s1600/photo%2B2-1.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://2.bp.blogspot.com/-G7901lao2sk/VC1VGF1HNoI/AAAAAAAACPI/_nGNGKPMaH4/s1600/photo%2B2-1.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">Library visits and about 1 millions books</span></td></tr>
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<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-d4eKJftTdcM/VC1VIe2DI9I/AAAAAAAACPs/jMre6s-yLF4/s1600/photo%2B3-1.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://4.bp.blogspot.com/-d4eKJftTdcM/VC1VIe2DI9I/AAAAAAAACPs/jMre6s-yLF4/s1600/photo%2B3-1.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">Parks almost every day</span></td></tr>
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<b>And meeting <u>8</u> new doctors... </b><br />
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<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-fv0Hmq_eloY/VCxp7dw4wYI/AAAAAAAACMU/d7nr-MUG5b0/s1600/IMG_2699.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://1.bp.blogspot.com/-fv0Hmq_eloY/VCxp7dw4wYI/AAAAAAAACMU/d7nr-MUG5b0/s1600/IMG_2699.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">Brave and happy at all his Doctor appointments, even when he was apprehensive. SO proud of him!!</span></td></tr>
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<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-5IH1E_-8rJU/VCxqAM-VE-I/AAAAAAAACM0/eYnFCEkIKdQ/s1600/IMG_3026.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://4.bp.blogspot.com/-5IH1E_-8rJU/VCxqAM-VE-I/AAAAAAAACM0/eYnFCEkIKdQ/s1600/IMG_3026.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">He collects hospital bands. I had to remove some that were giving him a rash after a few weeks. Ew.</span></td></tr>
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<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-MMqqnFFps28/VCxp8zsE1FI/AAAAAAAACMc/F8CFEokszOc/s1600/IMG_2701.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://4.bp.blogspot.com/-MMqqnFFps28/VCxp8zsE1FI/AAAAAAAACMc/F8CFEokszOc/s1600/IMG_2701.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">This awesome ball contraption in the lobby helped foster his love for the Children's hopsital of Colorado </span><span style="font-size: small;">or as Mr Boy calls it "The Hospital with the Balls."</span></td></tr>
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<b>...Then Mr. Boy started Preschool!! </b><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-4Om4OzInBnc/VC1VE37evuI/AAAAAAAACO0/ThL78whzvtU/s1600/photo%2B1-1.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://3.bp.blogspot.com/-4Om4OzInBnc/VC1VE37evuI/AAAAAAAACO0/ThL78whzvtU/s1600/photo%2B1-1.JPG" width="256" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">Official school picture</span></td></tr>
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<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-DFAB9XTeYbM/VCxqEAUkRyI/AAAAAAAACNc/fdUCqxwsODg/s1600/IMG_3411.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://4.bp.blogspot.com/-DFAB9XTeYbM/VCxqEAUkRyI/AAAAAAAACNc/fdUCqxwsODg/s1600/IMG_3411.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">Preschool Portable</span></td></tr>
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<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-zo4arDQWa6Y/VC1VFseG9xI/AAAAAAAACPA/IwdsGeFdOmU/s1600/photo%2B1.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://1.bp.blogspot.com/-zo4arDQWa6Y/VC1VFseG9xI/AAAAAAAACPA/IwdsGeFdOmU/s1600/photo%2B1.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">Working on homework.</span></td></tr>
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I will definitely elaborate soon on all the incredible developments since Mr Boy started Preschool. Just know that he loves it, begs for it everyday and is thriving!!Anonymoushttp://www.blogger.com/profile/06324222570588635059noreply@blogger.com1tag:blogger.com,1999:blog-6805737288978194108.post-21407388343237079802014-04-24T15:55:00.000-05:002016-03-19T13:16:27.249-05:00The Glory of Stretch Marks As you may already know, I am currently pregnant with Mr Boy's little sister! We've been busy with selling a home, moving states, buying a new house, etc... so this poor lil baby has not recieved much attention. (And she won't get much attention in this post either becuase it's mostly about ME. :) ) I was struck today by the fact that I am already in my 28th week! Mr Boy was born at 29 weeks, just one measly week into my 3rd trimester, so I can't believe I am only 1 week away from the same gestation. It's unreal. Thankfully the doctors are taking extra precautions to keep this precious life inside me as long as possible, with cervical ultrasounds every 2 weeks and weekly progesterone shots, which David has the priviledge of administering via my rump. I am determined to take this baby to the finish line.<br />
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<a href="http://1.bp.blogspot.com/-FVqWybHzU8Q/U1AbRF5mBUI/AAAAAAAACH4/0CUwMhecLaA/s1600/1922300_548651811574_31382809_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="200" src="https://1.bp.blogspot.com/-FVqWybHzU8Q/U1AbRF5mBUI/AAAAAAAACH4/0CUwMhecLaA/s1600/1922300_548651811574_31382809_n.jpg" width="200" /></a></div>
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As I reflect on Mr Boy's birth, I remember how early and traumatic it was. I remember the chaos and speed with which he was whisked away before I even had a chance to see him. I remember how small he looked. I also remember funny things like the smell of the hand soap we had to scrub our hands and arms with for 3 minutes every time we entered the NICU. But the weirdest thing I remember is that I didn't have any stretch marks. I didn't get to experience the inside-out belly button phenomenon some women get in the last few months of gestation. When women reminisce about their pregnancies or commiserate about the last trimester... when they couldn't eat without refluxing, or peed every 5 minutes, I can't relate. And when mothers talk about how many months and sometimes years it took to lose the post-pregnancy tummy, I have to admit that I was back to my old weight and form within one month (with the help of lots of stress and anxiety). *I would not recommend this as a fitness plan.<br />
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I must confess that I am feircely jealous of mommies who carry their babies full-term. I'm envious of stretchmarks and post-pregnancy pooch. When you have your baby prematurely, it feels like someone is stripping part of your motherhood away. Somehow you didn't do it right. Part of my pregnancy and motherhood experience was robbed from me... 1/3rd of it to be exact. And I am eagerly looking forward to the next 3 months with this pregnancy, when I can earn those badges of honor, fulfilling my pre-birth duities as a mother. I couldn't be more excited!<br />
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It's true... stretch marks can be unsightly and undesirable. But they are also a sign of motherhood. You worked hard for those marks. Battle scars. Like a soldier's insignia. Your skin went to it's limits and beyond, to carry that life. It's actually pretty incredible if you think about it.Anonymoushttp://www.blogger.com/profile/06324222570588635059noreply@blogger.com1tag:blogger.com,1999:blog-6805737288978194108.post-50994745787899273702014-03-16T17:16:00.002-05:002016-03-19T13:14:51.870-05:00Good Bye South Dakota, Hello Colorado! <div style="text-align: center;">
It's been a whole month since we sold our home, packed our belongings into a moving van and said "Goodbye" to South Dakota with eyes set on a future in Colorado, close to David's family. </div>
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<span style="font-size: x-small;">Dr. Ryckman, Pediatric Surgeon Jen Reitsma CPNP (Pedi Surgery) Dr. Adamiak, Gastroenterology</span></div>
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<span style="font-size: x-small;">Carolyn Dodson, Occupational Therapist Dr. Julie Johnson, Rehabilitation</span></div>
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Saying "Thank you!!!" and "Goodbye!!!" to a few of his doctors and the Sanford Children's Castle of Care, was a bitter-sweet affair, as we had to leave a hospital and doctors who know Mr Boy inside (literally) and out, and a staff that has been God's hands and feet to our family. I will miss the fact that all the front desk staff know Mr Boy's name, I will miss the short conversations I have with the free valet parking attendants who remember us because of our frequency to the castle, I will miss the nurses who have become our friends and confidants. There is a lot to miss and a lot to be nervous about going forward: new Doctors and hospitals, etc, but because we know the Lord has orchestrated every moment of this move for our family, there is no reason to fear. Instead, we can look forward to the fresh insights and new programs available for Mr Boy in Colorado.</div>
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Since our move, we took a week to visit my parents in Jacksonville, Florida.</div>
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Mr Boy did well on the plane:</div>
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...and had a blast during his first time at the beach!!!</div>
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... and at the Jacksonville Zoo...</div>
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...And seeing the downtown by bridge...</div>
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...And by water taxi!</div>
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We concluded our visit with a trip to St. Augustine to see Fort Castillo De San Marcos.</div>
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We are currently living with the oh-so-generous and accommodating in-laws, as we look for a new house. Dave's parents are the best! Please pray that we find just the right home, close to wonderful neighbors and future friends for Mr Boy. </div>
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Hello Colorado! It is a HUGE blessing to now be close to family, including cousins!! </div>
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<tr><td class="tr-caption" style="text-align: center;">Z and Mr Boy holding hands for prayer before dinner. </td></tr>
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It is sometimes hard to explain all that goes on in our home, as it's so foreign to most and sometimes private in nature. Plus, sometimes I just don't want to sound whiney. So I have a tendency to make issues that are horrible, sound lighter than they are. Case in point: Mr Boy's hypersensitivity to other kids and some sensory "triggers." I touched on it in my last post, but it was getting to the point that we wanted to pull our hair out and scream. I mentioned before that due to all the awful things that have been forced upon him in the hospital, he developed control issues. He would be happy as long has he had perceived control over his environment. Anything in his environment that was perceived to be out of his control: ex) me dancing, the curtains blowing in the wind, dust floating about, a new visitor, kids, animals, toys that made too much noise or unpredictable movements, etc... were just a few of the things we knew would surely cause a melt-down of epic proportions. It was not like this 24/7, but Mr Boy would go through seasons or weeks of being hypersensitive and weeks of freedom. </div>
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I say all this because I want to give a lil shout out to the Lord for the good things he has done in our lives. You see, in the weeks leading up to our move and subsequent FL vacation, Mr Boy was the worst he's been in a while. We even cancelled saying goodbye to a few families before we left, because they had kids and we couldn't stomach the thought of Mr Boy's reaction and figured it'd be best to avoid people altogether. :( We were terrified that the move would go horribly for him, and that the vacation would be a total loss to Mr Boy's fears and our frustrations. </div>
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Miraculously, a week or so before our move, Mr Boy became filled with peace and joy like we have never seen in him before. EVER. Since then, Mr Boy has simply blown us away. It was like a switch was flipped inside of him and he became a totally different boy. A boy FREE of his entangling and crippling fears. A boy FREE of the effects of the trauma in his life. We have seen him "get better" and go through seasons of not being as hypersensitive to sensory things before, but this is somehow different. In the past, we didn't like to celebrate these good times because we knew things would get worse once something triggered fear in him and we'd spiral down once again. But this time we are claiming ultimate freedom in his life and are praying this isn't another upswing on this emotional roller coaster. We pray this move signifies not only a physical move, but a spiritual move away from Mr Boy's fears and former triggers. You have just witnessed proof of the freedom in the pictures posted above. Our precious boy could never have experienced any of it without fear and trembling. And there is not just the absence of fear, but the addition of joy and peace! Good bye Anxiety, Hello Joy! Praise the Lord!! </div>
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<span style="background-color: #93c47d;"><span class="text Phil-4-6" id="en-NIV-29449"><sup class="versenum" style="font-size: 0.75em; font-weight: bold; vertical-align: top;">6 </sup>Do not be anxious about anything,<sup class="crossreference" style="font-size: 0.65em; font-weight: bold; vertical-align: top;" value="(<a href="#cen-NIV-29449A" title="See cross-reference A">A</a>)"></sup> but in every situation, by prayer and petition, with thanksgiving, present your requests to God.<sup class="crossreference" style="font-size: 0.65em; font-weight: bold; vertical-align: top;" value="(<a href="#cen-NIV-29449B" title="See cross-reference B">B</a>)"></sup></span> <span class="text Phil-4-7" id="en-NIV-29450"><sup class="versenum" style="font-size: 0.75em; font-weight: bold; vertical-align: top;">7 </sup>And the peace of God,<span style="font-size: 0.65em;"><sup class="crossreference" style="font-size: 0.65em; font-weight: bold; vertical-align: top;" value="(<a href="#cen-NIV-29450C" title="See cross-reference C">C</a>)"></sup></span> which transcends all understanding,<span style="font-size: 0.65em;"><sup class="crossreference" style="font-size: 0.65em; font-weight: bold; vertical-align: top;" value="(<a href="#cen-NIV-29450D" title="See cross-reference D">D</a>)"></sup></span> will guard your hearts and your minds in Christ Jesus.</span></span></div>
Anonymoushttp://www.blogger.com/profile/06324222570588635059noreply@blogger.com3tag:blogger.com,1999:blog-6805737288978194108.post-19268728778231861162014-01-22T10:40:00.000-06:002016-03-19T13:09:24.284-05:00No News Is Good News. <div style="text-align: center;">
It's been many months since I've posted anything, which is so nice! It is a good reason to rejoice when we have nothing to report. We've been busy enjoying a somewhat "normal" season, without many new medical changes. </div>
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But I don't have to think too hard to come up with a few cool things that have been happening in the life of Mr Boy. For one thing, he turned 3!</div>
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Since birth, Mr Boy has been in the Birth to 3 program, which has sent therapists (speech, physical, and occupational) to our house every week to work with Mr Boy. As the name suggests, it goes till age 3 and then they re-evaluate you to see if you still need services. If so, you go to a special preschool with therapy. After re-evaluation, they concluded that Mr Boy no longer needs services. This means that Mr Boy is no longer considered, "Developmentally Disabled." Praise the Lord! This basically means that while he still has medical needs, those needs no longer affect his regular development (speech, gross motor, fine motor).<br />
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Since Mr Boy was premature and has spent 5 months of his short life in the hospital, it was expected that he would not develop as quickly as his peers. He was spending his time surviving, not developing. So speech, growth, walking, etc would come a little later than most. Not to mention Mr. Boy's leg/foot bones and spine are not like everyone else's so not only should he be delayed due to his time in the hospital, we didn't know if he'd ever be able to walk properly. But here we are, Mr Boy almost 3 years old and he's already considered "Average" with his peers, caught up on every level, speech, gross motor, fine motor etc. It blows my mind. Having to overcome all those obstacles and still being up to par, makes him way ahead of the game, in my book.<br />
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Every parent thinks their own kid is a genius. You can see a kid pick his nose and think, "Ew..." but I can bet the parent is thinking, "He has such comedic timing... !" Or a kid can build a block tower and the parents are thinking, "He's going to be an Engineer!" It's only natural to see your own kid through genius-colored-glasses. And we are no exception. But really... we've decided Mr Boy is a genius. Seriously though. :)<br />
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<tr><td class="tr-caption" style="text-align: center;">From September</td></tr>
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We started going to Kindermusik. You know those silly toddler music classes that are designed to make parents look ridiculous, dancing and hopping up and down around the room in circles trying to get their toddlers to participate, while they pay exorbitant amounts of money, per class, for something they could easily do themselves at home? Yeah, that's the one. I think of it as paying money so my kid can socially interact with other kids his age. It's akin to buying friends. It is not beneath me.<br />
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<span style="font-size: x-small;">Mr Boy playing back in September</span></div>
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Mr Boy has trouble in social interactions with kids his age because kids are unpredictable. He's not as much awkward, as fearful. He likes to fully understand, control and predict the actions of everyone around him so he know's he's safe. He's had so many horrible things done to him in the hospital, you can't blame him for being a little defensive. He's finally great with adults, because they are predictable, but he can't predict what other kids his age will do and doesn't like it when they get close or touch him. They could bump his tube and that hurts. They could bump into him and knock him over. He is also hypersensitive to some sensory stuff, and kids seem to set that off. Adults don't do that stuff, and he's figured that out, but kids... those peeps be crazy.<br />
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Despite that, he's already made lots of progress with Kindermusik. The first class we spent in the hall. He cried most of the time. The second class we were able to sit in the doorway, and now, Mr Boy even joins in the dances when we all run and jump around in a circle like crazy people. It is so amazing to watch.<br />
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<tr><td class="tr-caption" style="text-align: center;">"Helping" me decorate his Birthday cake (notice the finger pokes and large piece missing)</td></tr>
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Mr Boy had a very minor/quick surgery a few weeks ago, and it went very well. Compared to his other surgeries, this one was a breeze... at least for me! All he can remember is that he got a stuffed animal, so he recalls the hospital visit as "fun." Whew... that was the goal! We don't need any more bad memories!<br />
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<tr><td class="tr-caption" style="text-align: center;">Dr Eeg and Mr Boy, who is clearly hyped up on Versed. We demanded it be ready for us as soon as we got to the hospital, so Mr Boy wouldn't have to be terrified for long. Thankfully that worked.</td></tr>
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Last week Mr Boy graduated from 2 orthopedic foot braces (SMO'S) to just one! We thought he would need them both forever, but they think that after a tendon transfer and Achilles heel lengthening surgery on his previously clubbed foot within the next year, Mr Boy will be able to just use orthopedic inserts (like the green one below) for both feet!<br />
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<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-Ca50x9iAQws/Ut_uWsN0RFI/AAAAAAAACDE/0B5Vkursyyg/s1600/DSC04545.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="228" src="https://2.bp.blogspot.com/-Ca50x9iAQws/Ut_uWsN0RFI/AAAAAAAACDE/0B5Vkursyyg/s1600/DSC04545.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Before</td></tr>
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<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-lrJ4RJQ27Zk/Ut_uWhn_xmI/AAAAAAAACDA/pCEyIkRCZiQ/s1600/DSC04547.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="239" src="https://1.bp.blogspot.com/-lrJ4RJQ27Zk/Ut_uWhn_xmI/AAAAAAAACDA/pCEyIkRCZiQ/s1600/DSC04547.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Now<br />
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<span style="font-size: small;">These are just some of the things that have been happening the past several months in the Phillips' house! We are praising the Lord for such a nice season of growth and health!</span></td></tr>
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Anonymoushttp://www.blogger.com/profile/06324222570588635059noreply@blogger.com3tag:blogger.com,1999:blog-6805737288978194108.post-67506009779919413492013-10-15T13:29:00.000-05:002016-03-19T13:01:42.394-05:00One Year Ago Today... One year ago today, Mr Boy had his 19 hour and 30 minute surgery, including 8 different procedures, 3 surgeons, and necessitating a one month ICU recovery.<br />
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I've shared most the details about the surgery on the blog before, but one thing I never shared was one of my big concerns leading up to that day: How was David going to eat while I spent every second at the hospital with Mr Boy? I knew Mr Boy could be hospitalized for about a month, so I made David one month's worth of dinners. I wasn't being an amazingly kind wife, I was being controlling and cheap. :) I know good and well that left on his own, David would just eat out, and left on his own in a kitchen full of unprepared food, David might just starve. So instead of letting him spend money eating out every night, or starving, I baked 3 huge casseroles and split them up into individual portions with various, already cooked veggie sides, tossed them in the freezer and left detailed microwave instructions. I am still surprised that he actually ate from 3 casseroles for an entire month, considering he is typically tired of leftovers after night two. What a good husband.<br />
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I still don't know how we got through that month, how Mr Boy came out of the hospital more outgoing than before, or how Mr Boy started walking again, only days after getting the external fixator bars unscrewed from his pelvic bones. I also never thought the wound that formed as his skin started sloughing off, would ever heal. But months later, with diligent care and dressings, the wound finally healed and Mr Boy's quality of life drastically improved.<br />
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I could never thank our skilled surgeons enough. I could never show our nurses just how much we appreciated them. I could never praise the Lord enough for keeping Mr Boy safe and for keeping David and me sane through it all. There were definitely moments when all I wanted to do was run screaming through the halls. I can't imagine how much more Mr Boy wanted to do that!<br />
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We are so blessed that we live in a time and place that has the kind of care that enables our son to not only live, but live well. We will always be grateful for this intense surgery but glad it's already a distant memory! Can you believe that the only lasting, negative side-effect of the surgery is that David still gets queasy at the thought of Pepperoni Casserole, Chicken Spinach Bake, or Baked Macaroni and Cheese? <br />
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<br />Anonymoushttp://www.blogger.com/profile/06324222570588635059noreply@blogger.com1tag:blogger.com,1999:blog-6805737288978194108.post-67943866307415831012013-08-06T18:45:00.002-05:002016-03-19T12:59:32.758-05:00Colorado TripHow to successfully drive 11 hours in the car with your 2 year old:<br />
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<b>1.</b> Buy a cheap table for the car seat for coloring, playing with cars, eating, and movies:<br />
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<b>2.</b> Buy some new toys like this sweet Curious George magnet set:<br />
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<b>3. </b>Make your own flannel graph:<br />
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<b>4.</b> Plan to stop for a long time at a rest area to let your child get their wiggles out.<br />
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<b>5.</b> Disregard all previous plans. -- Leave home at 3:30am, drive straight through without stopping and never play with any toys... then let your insanely calm and precious 2 year old just sit there, enjoying the scenery for hours on end. Bask in the glorious silence. OK, so our drive back wasn't as crazily calm as the drive there, but we never even played with the flannel graph. Didn't hurt to be over-prepared. I call that a success.<br />
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Our 10-day trip to colorado, including a 3 day camping excursion was incredible. It was refreshing to be around so much family, in such a beautiful place. Mr Boy doesn't have many friends his age here in Sioux Falls and is pretty skittish around other kids. So it was a blessing to see him connect with all his cousins, two of which were born just weeks away from Mr Boy.<br />
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Tickling his new best friend, cousin Z</div>
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<tr><td class="tr-caption" style="text-align: center;">BFF time</td></tr>
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Camping near Longs Peak</div>
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climbing rocks with some of the many cousins</div>
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bonding with his cousin G</div>
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roasting his first marshmallow</div>
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We took many walks to enjoy the mountainous views</div>
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There were many, many, many hugs with cousin A</div>
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dirty camping faces</div>
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This camping trip would not have been possible without Dave's parents' "house on wheels." I just blended up Mr Boy's meals before we went and kept them in the fridge in the camper. Easy Peasy.</div>
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Showing his first blood drawn as a result of rugged play outdoors, instead of from doctors. </div>
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We were so proud.</div>
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<iframe allowfullscreen="" frameborder="0" height="270" src="//www.youtube.com/embed/E7OrkiQYgJI" width="480"></iframe><br />
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The video shows how muchMr Boy connected with the family. It doesn't really seem remarkable unless you know just how shy and defensive Mr Boy used to be around people. He used to react to people like an abused puppy. But here you can see just how he's been blossoming lately. We are so proud of him! Praise the Lord!Anonymoushttp://www.blogger.com/profile/06324222570588635059noreply@blogger.com4tag:blogger.com,1999:blog-6805737288978194108.post-59040529081821184382013-07-22T13:14:00.002-05:002016-03-19T12:56:57.595-05:00Trip to the Omaha ZooWhen my parents from Florida, were here in Sioux Falls, visiting a few weeks ago, we all took a weekend trip to Omaha, to visit the incredible Henry Doorly Zoo and Aquarium.<br />
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aquarium</div>
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Mr Boy didn't mind the dark aquarium because it reminded him of Curious George's Cave Episode. </div>
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He kept yelling, "cave! George! cave! flashlight!"</div>
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Inside the largest indoor desert in the world</div>
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Some penguins are barely visible behind us.</div>
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Eating out with the grandparents at Famous Dave's</div>
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Playing in the sprinkler in our yard as the grandparents slave away picking weeds.</div>
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Today we drove 11 hours to Denver to visit Dave's family. We woke at 3:30am and drove like crazy till we got here at 1:30 (1 hour time difference). I prepared for weeks for this trip, thinking of all the ways we could keep Mr Boy entertained and happy for the long drive. I brought all kinds of things just in case and planned on letting him out to run around for an hour... but in the end, he just sat in his car seat, chatting and holding his monkey for most of the trip, content to keep on driving. We were very impressed with his car-trip skills. We will be here 10 days, hanging out with family and friends, and even go camping with the whole family while here. We've been watching a "Curious George goes Camping" video to get Mr Boy pumped up. If Curious George can do it, he can to. :) Will update when we get back!</div>
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Anonymoushttp://www.blogger.com/profile/06324222570588635059noreply@blogger.com0tag:blogger.com,1999:blog-6805737288978194108.post-29800579405485781702013-07-19T20:08:00.000-05:002016-03-19T12:55:41.219-05:00What "eating" with a G-tube looks like<div class="separator" style="clear: both; text-align: center;">
I am a very curious person. I am not curious in the same way Curious George is curious - I know this because I have been a frequent student of his cartoons recently, thanks to Mr Boy. Curious George goes after all possible ways to satisfy his curiosity, whereas I often choose to keep my questions to myself. Well, if I were you, I'd be wondering what it looks like to feed Mr Boy through his feeding tube. I'd also choose not to ask me such a thing for fear of offending me (which is silly, because you would not offend me, but lets be honest, sometimes we are silly). So, in order to satisfy any of your lingering curiosities, and since I figure this is something he wouldn't mind you seeing, I'll show you. Whether you care of not, here it is. :) </div>
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Mr Boy licks all the salt off his crackers before placing them in his discard pile, during his "snack"</div>
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The boy can lick through a sleeve of crackers in minutes.</div>
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Licking the flavor off cheetos, crackers, and cookies during "lunch"</div>
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I lay him down to push the food I blended up, into his G-tube.</div>
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Using a syringe to push the blended meal directly into Mr Boy's stomach. </div>
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I give him one of these 20 times a day on average, to give both water and food.</div>
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He is typically very patient with me as it only takes a few seconds. </div>
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Sometimes if I make certain meltable foods into small enough peices (such as a mini 3Musketeer bar), Mr Boy will actually swallow them, but there's about a 75% chance it's coming back out of his mouth. Mr Boy is chewing some things now, which is a great improvement the past few months since he used to just hold things in his mouth without actually moving his teeth. Now he chews things up before gently taking them out and putting them back on the table.</div>
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<u>Mr Boy's Blended Diet Recipe:</u></div>
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I pick one item from each bold category, depending on what I have on hand</div>
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<b> -Veggies</b>-1 jar baby veggie, or 1/2 cup of veggie blend, or 1/4-1/2 cup sautéed zucchini, or 1 cup </div>
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broccoli, or 1/4-1/2 cup peas, or handful fresh carrots, or 1/4 cup cooked sweet potato, or 1/4 cup corn</div>
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<b><span class="Apple-tab-span" style="white-space: pre;"> </span>-Fruit</b> -1 cup berries or fruit mix, or 1 apple, or 1 pear, etc</div>
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<b><span class="Apple-tab-span" style="white-space: pre;"> </span>-Meat/protein-</b> 1 jar of baby meat, or 1/2 cup tofu, or 1/4 cup canned tuna, or 1/4 cup canned salmon, or 1/4 <br />
cup canned chicken, or 1/4 cup cooked chicken/meat</div>
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<span class="Apple-tab-span" style="white-space: pre;"> </span>-<b>Milk</b> -9oz of 2% milk </div>
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<span class="Apple-tab-span" style="white-space: pre;"> </span>-<b>Additional Dairy</b>- 3/4 cup flavored yogurt, or 1/4 cup 2% cottage cheese, or 1/4 cup whole milk ricotta cheese</div>
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<span class="Apple-tab-span" style="white-space: pre;"> </span><b>-Oils/Calories </b>-1 TBSP canola oil, or olive oil, or flax oil, or coconut oil</div>
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<span class="Apple-tab-span" style="white-space: pre;"> </span>-<b>Additional Oil/Calories </b>-1/4 avocado</div>
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<span class="Apple-tab-span" style="white-space: pre;"> </span><b>-Additional Protein </b>-1 heaping TBSP peanut butter, or 1/4 cup peanuts, or 1/4 cup almonds, or 1/4 cup walnuts, or 1/8 cup sunflower seeds</div>
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<span class="Apple-tab-span" style="white-space: pre;"> </span><b>-Grain </b>-1/4 cup baby rice cereal, or 1/4 cup brown rice, or 1/4 cup cooked barley, or 1/2 </div>
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cup oat meal, or 1/2 packet cream of wheat, or 3 TBSP wheat germ </div>
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<b>-Juice </b>-3 oz - prune juice </div>
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-<b>Extra calories </b>-1 packet carnation instant breakfast essentials. </div>
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-<b>Children's Vitamin D supplement</b> - (1ml of D-Visol)<br />
-<b>Spices-</b> to help with digestion- ginger, cloves, allspice, cinnamon, nutmeg<br />
<b><span style="color: #0d1217; font-family: "arial"; font-size: x-small;">-</span></b><b><span style="color: #0d1217; font-family: "arial"; font-size: x-small;">Optional add-ins when they are on hand: </span></b></div>
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-1 hard boiled egg </div>
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-leafy vegetables -spinach, kale, salad mix</div>
Anonymoushttp://www.blogger.com/profile/06324222570588635059noreply@blogger.com3tag:blogger.com,1999:blog-6805737288978194108.post-30665894389031170182013-07-09T22:26:00.001-05:002016-03-19T12:54:08.550-05:00Plays well with others<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-w3oAMoIfVks/UdzOZ6lUdhI/AAAAAAAAB5Q/O70Uvy-4Rvw/s1600/DSC04098.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://4.bp.blogspot.com/-w3oAMoIfVks/UdzOZ6lUdhI/AAAAAAAAB5Q/O70Uvy-4Rvw/s640/DSC04098.JPG" width="508" /></a></td></tr>
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Mr Boy has always been nervous around other kids, but lately he has been blossoming and been getting more and more comfortable. Last weekend we had a lovely dinner with our friends Scott and Marie Aseltine, and their 1 1/5 year old niece Camilla. They have been together on other occasions, but Mr Boy always gives her the stink eye and steers clear of her. This time was totally different. He played near her happily, like it was no big deal. But this was a HUGE deal. We were so encouraged by their shenanigans. He let Camilla tickle him and shortly after the scene in this video, she was practically tackling him with tickles while he lay on the floor. It was fabulous craziness. Praise the Lord!<br />
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<iframe allowfullscreen="" frameborder="0" height="270" src="//www.youtube.com/embed/eZqyVCbIzZU" width="480"></iframe>Anonymoushttp://www.blogger.com/profile/06324222570588635059noreply@blogger.com0tag:blogger.com,1999:blog-6805737288978194108.post-5469599760810691242013-06-07T13:55:00.001-05:002016-03-19T12:53:30.540-05:00Mr Boy on the NewsMr Boy was featured on the news for his almost 20 hour-long surgery.<br />
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<a href="http://www.keloland.com/newsdetail.cfm/a-20-hour-surgery/?id=148917#.UbIsWdHaoD4.blogger">KELOLAND.com | A 20 Hour Surgery</a>Anonymoushttp://www.blogger.com/profile/06324222570588635059noreply@blogger.com0tag:blogger.com,1999:blog-6805737288978194108.post-62904042887565529402013-06-01T08:52:00.000-05:002016-03-19T12:53:13.377-05:00Blending our own Homemade 'Formula' - The Blenderized diet<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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<span style="background-color: #93c47d; color: #333333; font-family: "arial" , "helvetica" , sans-serif; line-height: 14px; text-align: left;">In our seemingly endless quest to find a solution to Mr Boy's digestive/eating issues, we have finally settled with the best possible solution till Mr Boy gains the ability to eat food on his own. And that is called the Homemade Blenderized diet. </span><br />
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<span style="background-color: #93c47d; color: #333333; font-family: "arial" , "helvetica" , sans-serif; line-height: 14px; text-align: left;">Mr Boy is physically able to eat, but because of vomiting 10 times a day his first year and about 5 times a day ever since, he is just afraid to swallow anything other than creamy things. He plays well with food and will try anything and hold it in his mouth for a period of time, but everything gets taken back out and handed back to me after the flavor is gone. He just will not swallow hard foods. It's basically like learning to swallow a pill and just not getting the nerve. Every time solid food gets too close to his throat, his gag reflex kicks in and won't let it pass. </span><br />
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<span style="margin-left: 1em; margin-right: 1em;"><a href="http://1.bp.blogspot.com/-4z46cKco9WI/UZfUMjNHFWI/AAAAAAAAB38/O8c386qdCTg/s1600/IMG_0111+-+Version+2.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://1.bp.blogspot.com/-4z46cKco9WI/UZfUMjNHFWI/AAAAAAAAB38/O8c386qdCTg/s400/IMG_0111+-+Version+2.JPG" width="400" /></a></span></span><br />
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<span style="color: #333333; line-height: 14px; text-align: left;">We have tried endless brands of the specialty formula through the feeding tube to stop the vomiting and w</span><span id=".reactRoot[94].[1][2][1]{comment422374714514027_422410324510466}.0.[1].0.[1].0.[0].[0][2].0.[3]" style="color: #333333; text-align: left;"><span style="line-height: 14px;">e have tried everything to get him to just eat... weekly therapy, fun tools, junk food, but nothing has worked quite yet. So while we wait for Mr Boy to grow, mature, and finally take the big step toward eating, we want to make him the most comfortable possible, by eliminating his daily vomiting, creating a safer environment to swallow.</span></span></span><br />
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<span style="background-color: #93c47d; font-family: "arial" , "helvetica" , sans-serif;">Dave's Parents came to visit!</span></div>
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<tr><td><span style="background-color: #93c47d; font-family: "arial" , "helvetica" , sans-serif;"><span style="text-align: left;"><span style="color: #333333;"><span style="line-height: 14px;">While trying to find just the right formula to feed Mr Boy through the feeding tube, we found that lo and behold, you can actually blend up your own food and put it through the feeding tube. It's called the Blenderized Diet. Sounds pretty obvious, but we've been too focused on what the doctors' prescribe and tell us to do, which typically doesn't involve trying something 'natural.' Thankfully we got the tip from a seasoned G-tube mommy, and the nutritionist at the hospital helped us with some recipes to ensure Mr Boy gets all the proper nutrition. We blend up nuts, beans, grains, yogurt, milk, </span></span></span><span style="color: #333333;"><span style="line-height: 14px;">avocado, meats, fruits and veggies, etc. And put it through the tube. Thanks to Dave's parents, we have a professional grade blender so we can literally pulverize anything into liquid, so it fits through the tube. </span></span></span><br />
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<span style="color: #333333;"><span style="background-color: #93c47d; font-family: "arial" , "helvetica" , sans-serif; line-height: 14px;">The mighty Vitamix</span></span><br />
<span style="background-color: #93c47d; font-family: "arial" , "helvetica" , sans-serif;"><span style="color: #333333;"><span style="line-height: 14px;">It would probably grind wood into mulch if need be.</span></span> </span><br />
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<span style="background-color: #93c47d; font-family: "arial" , "helvetica" , sans-serif;"><span style="color: #333333; line-height: 14px; text-align: left;">There are several medical reasons as to why this is much, much better for Mr Boy, whole foods are always going to be better for you than commercial formula. A 'normal' two year old shouldn't be only drinking formula, and neither should Mr Boy. Formula was just the only option we thought we had, but we can just take what a 'normal' two year old would eat, (except even more healthy, because he can't refuse all the veggies!) and grind it up to fit through his tube. We started this diet for Mr Boy about 3 months ago and Mr Boy seems to feel better all-round. There have also been a lot of better changes to his stools, but you don't want to hear about that! :) He also only vomits about twice a day, so that's an improvement! It just feels better knowing we are giving him whole foods, and that his tummy is tolerating it and thriving. If he is vomiting less, his stomach must be feeling better. Since his tummy feels better, he is more interested in food!</span></span></td></tr>
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<span style="background-color: #93c47d; font-family: "arial" , "helvetica" , sans-serif;"><span style="color: #333333; line-height: 14px; text-align: left;">We were also able to put his backpack and feeding pump into storage because we no longer have to pump the food into his tube slowly, over hours at a time and through the night to keep him from puking. Now, we just squirt the food into his G-tube port with a 2 oz syringe, 16 times a day (4 times for breakfast spread out over an hour, 4 for lunch, 4 for dinner, and 4 late in the evening). Seems like a lot, but it is honestly a lot easier than dealing with tubing, backpacks, pumps and formula. And since we no longer keep him hooked up to the pump at night, I have been able to actually sleep through the night! And Mr Boy sleeps better since he isn't getting tangled up in his tubing all night long. We both agree: sleep is good.</span><span style="color: #333333; line-height: 14px; text-align: left;"></span></span><br />
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<span style="background-color: #93c47d; font-family: "arial" , "helvetica" , sans-serif;">Thank the Lord, we were able to find out about the Blenderized Diet and get Mr Boy a few steps closer to healing.</span></div>
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<span style="background-color: #93c47d; font-family: "arial" , "helvetica" , sans-serif;">Matthew 6:25-27, 31-34</span></div>
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<span style="background-color: #93c47d; font-family: "arial" , "helvetica" , sans-serif;"><span class="text Matt-6-25"><sup class="versenum" style="font-weight: bold; vertical-align: top;">25 </sup>“Therefore I tell you, do not worry<sup class="crossreference" style="font-weight: bold; vertical-align: top;" value="(<a href="#cen-NIV-23308AC" title="See cross-reference AC">AC</a>)"></sup> about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes?</span> <span class="text Matt-6-26" id="en-NIV-23309"><sup class="versenum" style="font-weight: bold; vertical-align: top;">26 </sup>Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them.<sup class="crossreference" style="font-weight: bold; vertical-align: top;" value="(<a href="#cen-NIV-23309AD" title="See cross-reference AD">AD</a>)"></sup> Are you not much more valuable than they?<sup class="crossreference" style="font-weight: bold; vertical-align: top;" value="(<a href="#cen-NIV-23309AE" title="See cross-reference AE">AE</a>)"></sup></span> <span class="text Matt-6-27" id="en-NIV-23310"><sup class="versenum" style="font-weight: bold; vertical-align: top;">27 </sup>Can any one of you by worrying add a single hour to your life?<sup class="crossreference" style="font-weight: bold; vertical-align: top;" value="(<a href="#cen-NIV-23310AF" title="See cross-reference AF">AF</a>)"></sup></span></span></div>
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<span style="background-color: #93c47d; font-family: "arial" , "helvetica" , sans-serif;"><span class="text Matt-6-31" id="en-NIV-23314"><sup class="versenum" style="font-weight: bold; vertical-align: top;">31 </sup>So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’</span> <span class="text Matt-6-32" id="en-NIV-23315"><sup class="versenum" style="font-weight: bold; vertical-align: top;">32 </sup>For the pagans run after all these things, and your heavenly Father knows that you need them.<sup class="crossreference" style="font-weight: bold; vertical-align: top;" value="(<a href="#cen-NIV-23315AI" title="See cross-reference AI">AI</a>)"></sup></span> <span class="text Matt-6-33" id="en-NIV-23316"><sup class="versenum" style="font-weight: bold; vertical-align: top;">33 </sup>But seek first his kingdom<sup class="crossreference" style="font-weight: bold; vertical-align: top;" value="(<a href="#cen-NIV-23316AJ" title="See cross-reference AJ">AJ</a>)"></sup> and his righteousness, and all these things will be given to you as well.<sup class="crossreference" style="font-weight: bold; vertical-align: top;" value="(<a href="#cen-NIV-23316AK" title="See cross-reference AK">AK</a>)"></sup></span><span class="text Matt-6-34" id="en-NIV-23317"><sup class="versenum" style="font-weight: bold; vertical-align: top;">34 </sup>Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.</span></span></div>
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Anonymoushttp://www.blogger.com/profile/06324222570588635059noreply@blogger.com4tag:blogger.com,1999:blog-6805737288978194108.post-7729240473715636312013-05-18T15:09:00.000-05:002016-03-19T12:48:50.612-05:00New Milestones<div class="separator" style="clear: both; text-align: center;">
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Summer is finallllllly here in South Dakota. So that means we get to go to parks everyday! This week has been chocked full of visits to parks. Mr Boy has a mild obsession with them as of late, and I am loving it. This week Mr Boy started crawling up the steps and going down the slides at parks all by himself! You're probably thinking, "Who cares?" And I don't blame you! But I'll put it into perspective: For a long time now, we watch babies pass Mr Boy on the playset, crawling up the stairs, going down the slides, while their moms nonchalantly watch from the sidelines. When you see multiple 1 year olds fly past your 2 year old on the playset, over and over, it gets a little disheartening. He couldn't accomplish any one part of the playground by himself, and was the only kid who still needed his mommy's help... and not just because of his more limited muscles and bone structure, but a big part due to his fears. So it was especially moving and incredible to see our lil boy conquer the entire playground by himself!<br />
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<tr><td class="tr-caption" style="text-align: center;">Mr Boy was being a ham and wouldn't open his eyes for the camera.</td></tr>
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Honestly, he is really not all that far behind his peers, but it's just amazing to see him finally so close to moving and playing like them, when he had so many obstacles and setbacks. It's easy for us to forget that not only was Mr Boy born 2.5 months early, but he has spent nearly 5 months out of his short 2 and 1/2 year life, in the hospital. And during those 5 months spend in the hospital, he was surviving, not developing, so it would be natural for him to be at least 5 months behind developmentally. Then add to that, his physical challenges and top it off with a strong fear of everything, and you've got a mess! :)<br />
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Yet Mr Boy continues to amaze us just when we are starting to get discouraged and sad about how fearful he is, by doing something brave. We've had a hard few months ever since Mr Boy's panic attacks started, but he really hasn't had an intense attack in several weeks. Just a few panicky moments every week and a lingering, heightened sense of fear. There have been many sad moments this past month as we have tried to partake in fun activities with Mr Boy, only to be shot down by his tearful, panic stricken screams, even when approaching our own neighborhood park. We just never know what we are going to get with him, or what will trigger fear. One day it's a fun time at the park, another it's screaming in fear and this is not the usual terrible twos... this is panic. I know this because he has also started throwing the typical "terrible twos" tantrums and they are so cute and manageable in comparison. Anyhow, this week has been a good week, free of his usual fears, and because of that, he has grown so much in just one week!<br />
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Mr Boy even played at a park full of other kids and didn't scream in the face of any of them! Crazy, I know. He's growing up. I think he was calm enough to let his guard down a little and actually watch the kids playing and realized that none of them were paying any attention to him, and that made him happy and comfortable. Usually in his life, when the attention is on him, something bad is about to happen, so no attention is good attention!</div>
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I think the further we get from his pain, the more Mr Boy will blossom. Since his surgery, we have not had to do his nightly painful routine, so he no longer has to endure a forced painful procedure every night, at the hands of his parents. Praise the Lord! And now that we give him "happy medicine" for every Doctor visit, we have been able to eliminate the main place where all his fear originated. We are excited for this coming summer of limitless possibilities! </div>
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Some milestones and silly moments caught on video:<br />
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<iframe allowfullscreen="" frameborder="0" height="270" src="//www.youtube.com/embed/mDnDOvx53V4" width="480"></iframe>Anonymoushttp://www.blogger.com/profile/06324222570588635059noreply@blogger.com0tag:blogger.com,1999:blog-6805737288978194108.post-51719977113997550422013-05-09T08:38:00.001-05:002016-03-19T14:41:38.043-05:00Super Hero Cape!<div class="separator" style="clear: both; text-align: center;">
Last week we got a special package in the mail from my amazing friends with whom I grew up, in Florida: Manika Chuon, Colby Roberts, and her wonderful husband, Joe!! We got 3 hand-made, personalized capes!!! </div>
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<b style="background-color: #93c47d;">Philippians 4:13</b><br />
<span style="background-color: #93c47d; font-family: "times" , "times new roman" , serif;"><i>I can do all things through him who strengthens me.</i></span></div>
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<i><b style="background-color: #93c47d;">Romans 8:31, 37-39</b></i><br />
<i>If God is for us, who can be against us? </i><br />
<i>No, in all these things <b>we are more than conquerors through him who loved us.</b> For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord. </i></div>
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We were shocked and humbled by the capes and so excited to put them on and run around! Living so far away from our families and all the friends with whom we grew up, can make us feel a bit isolated and lonely at times. But these gifts made us feel so incredibly loved and supported!! Thank you Manika, Joe and Colby, for your loving and inspirational capes!!! We can't wait for the weather to finally get nice so we can run around outside with them on! I am sure Mr Boy will be wearing his cape to all future Doctor appointments.</div>
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Superhero faces:</div>
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Anonymoushttp://www.blogger.com/profile/06324222570588635059noreply@blogger.com1tag:blogger.com,1999:blog-6805737288978194108.post-76665571826245021752013-05-03T15:44:00.000-05:002016-03-19T12:05:57.200-05:00A Good ReminderMy mom gets daily devotionals emailed to her every day by Aletha Hinthorn, who leads 'Come To The Fire' Christian Conferences around the country. They also happen to be friends and my mom has shared with Aletha over the years, about our family and what it was like when we first found out about Mr Boy's condition. Today's devotional from Aletha shared a little about our story from my mom's perspective. It is such a wonderful reminder of the Lord's sovereignty and mercy, even in times of great darkness. It was hard for us to see it then, and even sometimes our vision gets clouded when things get tough, but it truly is an incredible honor and blessing to be Mr Boys parents... an honor of which we are greatly unworthy.<br />
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<strong>What God Said to a Hurting Friend</strong></div>
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by Aletha Hinthorn</div>
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The night a friend in Florida was expecting to hear if her first grandbaby was a boy or girl, her daughter called to tell her that the ultrasound showed the baby is not a healthy baby.<br />
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She wrote, "Don and I cried and prayed with the kids and then we had our usual prayer time. We both were struggling not to lose it. I then walked down the hall to go to a bedroom where I go to pray. As I walked down the hall I was planning on bawling as soon as I shut the door!<br />
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"I walked through the door and before I could even sit down, the Lord said, 'You are seeing this all wrong. I am giving them an honor by sending them this baby.' With those words He also gave me such a great joy as I saw that it was true. I began praising and thanking Him instead of crying! I was amazed! It was definitely not what I was expecting! I have had some crying moments since then but that deep trust that He is really sending this for good is still there."<br />
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God can share His thoughts with those He knows will accept His will as perfect.<br />
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<em>Thank You, Jesus, for the peace and joy that come when we acknowledge Your will to be good and perfect.</em><br />
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"Let God transform you into a new person by changing the way you think. Then you will know what God wants you to do, and you will know how good and pleasing and perfect his will really is" (Romans 12:2).</div>
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Anonymoushttp://www.blogger.com/profile/06324222570588635059noreply@blogger.com1tag:blogger.com,1999:blog-6805737288978194108.post-40909763255905447412013-04-23T16:10:00.000-05:002016-03-19T12:05:25.155-05:00Successful Surgery<div class="separator" style="clear: both; text-align: center;">
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Leaving Mr Boy on the operating table yesterday morning was so hard, but the fact that he received some drugs to keep him calm in the waiting room, helped my nerves as well. Just seeing him so calm and knowing he wouldn't remember it, gave us some peace. He was only a little scared when his mommy had to suit up in her sterile 'space suit,' hair net and mask in order to carry him into the operating room, but by the time we entered the O.R., he was quacking like a duck and happily pointing to the Surgeon and yelling, "Marco!" (Dr. Demarco).<br />
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After the first hour of surgery, we hear upsetting news: that the surgery couldn't go exactly the way we had been hoping it would. But 3 hours of surgery later, the alternative outcome was looking possibly better than the first. We still got what we wanted, which was to eliminate the nightly procedure which caused Mr Boy fear and pain, and we think this was mostly accomplished. Mr Boy had a stitch coming out of his pelvic bone from the last surgery, which was meant to be permanent, but was inching it's way to the surface... which was causing his tissue to inflame and become irritated... which was partially blocking the main exit for his urine to drain out of his bladder... which was probably the cause of his intensely painful bladder spasms he was feeling every night this past week. Since his bones are healed, it was ok for them to remove the stitch and now we can allow the tissue to reduce in size.<br />
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In the hospital after surgery. </div>
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The funny thing is that there was a large plus side to the fact that his bladder couldn't drain quickly, causing the painful spasms... it enabled his bladder to stretch out quite a bit and become more flexible. Normal bladders are very flexible so they can fill and void, but since Mr Boy's was inside out and not functioning for his first 2 years, it was very rigid, so when they tried to close it and create a vesicostomy in October, it was not able to be a "traditional" vesicostomy, and it has caused us headaches as it tries to close on us, ever since. Now that it the bladder is more flexible, they were able to make the vesicostomy more traditional and larger, so hopefully this one will not close up on Mr Boy or at least it will give us more time.<br />
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Smiling after a little nap, a new little car, and a little morphine.</div>
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It was so hard to see Mr Boy in pain this past week with the intense bladder spams. We felt helpless and in the dark. But it's incredible to see the Lord use Mr Boy's suffering for good, to make his bladder more functional. The Lord knew what was happening even when we didn't and had a plan all along.<br />
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<span style="font-family: "times" , "times new roman" , serif;"><i><b style="background-color: #93c47d;">Romans 8:28</b></i></span></div>
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<span style="font-family: "times" , "times new roman" , serif;"><span class="text Rom-8-28" id="en-NIV-28145"><i style="background-color: #93c47d;"><sup class="versenum" style="font-weight: bold; vertical-align: top;">28 </sup>And we know that in all things God works for the good<sup class="crossreference" style="font-weight: bold; vertical-align: top;" value="(<a href="#cen-NIV-28145BD" title="See cross-reference BD">BD</a>)"></sup> of those who love him, who have been called</i></span></span></div>
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<i style="background-color: #93c47d;"><span class="text Rom-8-28" id="en-NIV-28145" style="font-family: "times" , "times new roman" , serif;">according to his purpose.<sup class="crossreference" style="font-weight: bold; vertical-align: top;" value="(<a href="#cen-NIV-28145BF" title="See cross-reference BF">BF</a>)"></sup></span><span style="font-family: "times" , "times new roman" , serif;"> </span></i></div>
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Riding home this morning and SO excited about it!</div>
<br />Anonymoushttp://www.blogger.com/profile/06324222570588635059noreply@blogger.com2tag:blogger.com,1999:blog-6805737288978194108.post-14347102012664308322013-04-17T20:36:00.002-05:002016-03-19T12:03:19.586-05:00Unexpected Surgery This Coming Monday<div style="text-align: center;">
<b><u>Psalm 46:1-3, 7</u></b></div>
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<i>"God is our refuge and strength, and ever-present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though it's waters roar and foam and the mountains quake with their surging. ... The Lord Almighty is with us; The God of Jacob is our fortress."</i></div>
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We have been having continual trouble with Mr Boy's vesicostomy ever since surgery in November and have been in to see the urologist regarding this issue a few times, but it just seems to be getting worse. Yesterday, we decided to take Mr Boy in to see his urologist because of this issue, as well as horrible pain Mr Boy has had the past few nights. He screams and writhes in pain, pointing to his abdomen and yelling, "mommy, daddy, hurt!" We were very close to taking him to the ER at midnight Monday night due to the intensity and duration of the pain. We felt quite helpless, but believe the pain is due to bladder spasms. We have also noticed something prolapsing out of one of his abdominal holes, intentionally left open after his surgery in November.<br />
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I was extremely nervous about taking him in, especially since I knew the Dr would cause him pain during the visit. We prayed a LOT and then I gave him the anti-anxiety medication, (which was prescribed for Mr Boy to take for Dr visits and procedures) for the first time, which made me more nervous, since I didn't know how it would affect Mr Boy and if it would be enough to keep him calm and out of pain, but it worked perfectly!! It kicked in right away and made him hilarious. He was very outgoing, giggly, silly and drowsy the whole time. He even didn't mind being laid on the bed and examined by the doctor. When the doctor caused him discomfort, he would say, "owwww," and then continue pointing out the fun characters and colors painted on the ceiling. It was absolutely wonderful compared to the typical, horrible fear and screaming during visits. Just knowing that Mr Boy would not be negatively affected emotionally, by this Dr visit, made a load come off my shoulders. Mr Boy was so funny and happy during the visit, I was still giggling and happy even when I heard the surprise that Mr Boy would need surgery.<br />
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The surgery is going to be on Monday at noon and they blocked out 4 hours for it, but it may not take that long, it all depends on what they find when they go in and what they decide to do about it. We have a very specific prayer request for the surgery, for an outcome we think will make life so much better for Mr Boy and eliminate the need for the painful things we have to do to him each evening, which make him fearful and anxious about bedtime. If we didn't have to do those things, it would be amazing. We don't want to go into details on the blog due to the private nature of the surgery, so we just ask that you pray that the Lord's will be done and that Mr Boy's quality of life and health be improved.<br />
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<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-3dYjY5Uv_uM/UW9BdnokxnI/AAAAAAAABz8/bbm-jRzAxJw/s1600/DSC03576.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="225" src="https://3.bp.blogspot.com/-3dYjY5Uv_uM/UW9BdnokxnI/AAAAAAAABz8/bbm-jRzAxJw/s400/DSC03576.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Introducing his new Sally car to McQueen</td></tr>
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