tag:blogger.com,1999:blog-79798870755296733962024-03-18T23:08:25.999-04:002 by 22Melissahttp://www.blogger.com/profile/02292122189017306521noreply@blogger.comBlogger137125tag:blogger.com,1999:blog-7979887075529673396.post-13589118094808257462014-12-15T10:23:00.000-05:002014-12-15T10:23:03.179-05:00Do You See What I See?Parts of this post have been sitting in my drafts for 3 weeks now.<br />
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It's been spinning around my head for quite a few months.</div>
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And now, it's finally published.</div>
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Occasionally I bump into people I haven't seen in a while. We do the typical "How have you been?" "Good! You?" "Good" and after a brief silence it's usually followed by "So how's Rae? ....I keep up with your blog." And sometimes, they'll say something like:<br />
"I don't know how you do it."<br />
"You're such a good mom."<br />
or there have been a few times where they'll say something like,<br />
"I'm so proud of you for keeping your faith through all of this."<br /><br />
I never really know how to respond to any of those, but especially the last one.<br />
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I always try to be very open and honest about the things I've dealt with in the past, <a href="http://2by22.blogspot.com/2014/01/youre-fat-ugly-and-no-one-likes-you.html">eating disorders</a>, depression, anxiety, and an <a href="http://2by22.blogspot.com/2014/10/all-of-me.html">unplanned pregnancy</a> just to name a few.<br />
And now I'm faced with another battle: a child with <a href="http://2by22.blogspot.com/2014/09/keep-my-eyes-above-waves.html">ongoing health issues</a> that we don't have a firm diagnosis of what is causing her body to not run the way it should.<br />
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But it blows my mind people are surprised I can keep my faith strong.<br />
I'd be crazy not to.<br />
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<a href="http://2by22.blogspot.com/2014/06/raes-story.html">This year</a> has been hard.<br />
The past <a href="http://2by22.blogspot.com/2013/11/shaken.html">4 years</a> have been challenging.<br />
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But how could I not see God's work in everything?<br />I spoke a little bit about this in my "God moment" I shared at MOPS on Friday, but most of you weren't there, so I'll share it again (Plus now I can actually gather my thoughts and no one can see me shaking like a leaf).<br />
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Last year when Rae dropped off the weight chart and stopped absorbing her food properly the first thing her doctors thought could be wrong was a food allergy. I remember them cutting us off from dairy and soy first. I was still nursing, so I had to cut it out of my diet as well. Which, as a huge fan of cheesy-everything dishes I found myself at a loss for what I could actually eat. I mean, soy and dairy are in EVERYTHING. Then they took away our wheat, thinking maybe she had Celiacs Disease and then eggs too. I was basically a vegan who could eat meat (which is ironic now, because I HATED that elimination diet and now I'm a vegan by choice.) But in that time, I met my good friend Katie, who has Celiacs AND a dairy allergy. She was an amazing resource to me. She would send me recipes, tell me the good kinds of gluten free foods and even made me a few fantastic meals on a week I was especially overwhelmed. And I just kept thinking in that time, that wasn't an accident. I didn't even know Celiacs was a thing until I met Katie, and in the year she was brought into my life and put at my MOPS table right when I needed her.<br />
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Months passed and Rae didn't get better. She actually got worse. She was constantly tired. She regressed from standing and crawling around to mostly being lethargic. When we would hold her hands to encourage her to put weight on her legs, they would give out, she would toe in and her legs would cross each other as we tried to guide her into walking. <a href="http://2by22.blogspot.com/2014/01/not-diagnosis-but-hunch.html">She was seen by more specialists</a> who thought she may have Cerebral Palsy. I remember the next day after that post I was approached by a woman I didn't know. She told me I know you don't know me, but your blog came up in my news feed and went on to tell me how her niece had CP. She told me about her therapies and how well she was doing. I just remember the next week we went in for Rae's MRI to see if this really was CP or not and I was calm. Talking to Karen those few days beforehand had completely put me at ease, and I wasn't stressed out about the outcome. I knew we'd be okay if that's what the MRI showed.<br />
But it didn't. Rae's MRI showed no brain damage or lesions or anything!<br />
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However, the very week after her MRI we were admitted to the hospital for the first time. She had her first <a href="http://2by22.blogspot.com/2014/02/first-ng-feed.html">feeding tube placed</a>. It was an Nasogastric tube, meaning it had to be threaded up her nose and down to her stomach. And I had to be the one to place it when we went home. I had to burrito wrap her in a blanket to keep her arms down, thread this horrible tubing up her nose, down her throat and into her stomach, tape it to her face, then check it to make sure it was indeed in her stomach and not in her lungs (which would cause her to aspirate if it was placed wrong. I'm still not sure how I was able to be held responsible for this at home with no medical training...) It was terrifying. I remember the very first time Rae ever pulled it out when I was home alone was a day when someone was bringing me a meal (because MOPS moms are awesome). And the woman who was bringing me a meal was none other than my friend Julie...who was a pediatrician. I remember she came in and helped me get Rae all situated and helped calm her down before I placed it. And she calmed me down as I fumbled, upset I had to do this awful thing to my own child. I finished, cuddled Rae close to comfort her, like I always did and Julie told me I had done well and I was doing exactly what I needed to do and when she closed the door, leaving us a meal, I just cried and cried, overwhelmed at God's perfect timing. Had it been anybody else at my door at that time, they probably would have been as freaked out as I was and probably would have just left me to do it alone.<br />
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I literally have at least 20 other examples of people who were there without being asked, right when I needed them with a coffee or a similar experience to share, verses that were in my devotions that said exactly what I needed to read, words that were spoken to me saying exactly what I needed to hear.<br />
<br />
I have a choice to write what I want in my blog.<br />
This is my story and people read it.<br />
Like, thousands of people every week.<br />
Which, yes, kind of weirds me out sometimes.<br />
It's a lot of pressure.<br />
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But it's my chance to tell you <b>the only thing that gets me through the chaos is knowing that there is a God who loves me and Rae and Little S and Big S and is going to take care of us.</b> He has proven it over and over and over again. It blows my mind the way things have worked out. Through everything that should have torn our family apart, we've stayed strong.<br />
All these things you have to see first hand to truly understand the gravity of God's perfect timing.<br />
It reminds me of the Christmas song Do You Hear What I Hear<br />
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You could very easily mistake the way things have worked out in our lives as a mere coincidence. </div>
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You could chalk it up to being lucky. </div>
You can say we were dealt a good hand.<br />
But let's call it what it is: God has blessed us beyond measure. Especially so in the past year through the people he placed in my life right when I needed them.<br />
If you have seen what I've seen, you'd know there's no way this was coincidence, it's all part of His plan that's been perfectly orchestrated to get me to where I need to be.<br />
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I have chosen the way of faithfulness; I have set my heart on your laws.<br />
Psalm 119:30<br />
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Melissahttp://www.blogger.com/profile/02292122189017306521noreply@blogger.com0tag:blogger.com,1999:blog-7979887075529673396.post-85494461848952927892014-12-11T14:19:00.002-05:002014-12-11T14:19:38.863-05:00DNA test.Rae had the mito DNA test done back in September and yesterday we went to her geneticist at Children's to get the results.<br />
The results were negative.<br />
What does that mean?<br />Absolutely nothing.<br />
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I'm not joking. The results mean nothing.<br />
She could still have mito and it not have been picked up on this test.<br />
She's still considered "suspected of mitochondrial disease"<br />The test was supposed to give us an answer if this was a maternal strain of mitochondrial disease or not, but apparently it has a high false negative reading.<br />
So we can't even rule that out.<br />
We can't rule it out being a genetic issue that could happen in our other children, should we one day want to have more.<br />
And we definitely aren't ruling out mito.<br />
In fact, I was informed yesterday, she'll be "suspected" of mito until they diagnose her with it or if they find a different disorder she has.<br />
<br />So that sucks.<br />
The only thing they found on the DNA test was one genetic mutation that may or may not be presenting itself.<br />
We did further testing on that yesterday and I guess it's the one good thing that came out of this testing. Even if she doesn't have the disorder associated with the gene she needs to know that when it comes time for her to have kids as they could have it as well.<br />
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So what now?<br />We were given the option to do more genome exome sequencing.<br />
Basically a more in depth DNA test that would go even further into her genes.<br />
More tests that could pick up on more genetic strains of mito or other genetic mutations. But once again, this test is inaccurate and from what was explained to me, tends to pick up on genetic mutations that may not even mean anything.<br />
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So we're taking a break from testing.<br />
It's been a long year, and the stress of "Is it this?" or "Go see this specialist." and "Let's poke Rae some more!" is exhausting.<br />
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But since she's still suspected of mito, the course of treatment is the same either way.<br />
We're treating the symptoms.<br />
She'll stay on her gtube (unless they switch her to the NG for a bit, more on that another time). She'll keep seeing a GI, Neurogeneticist, Immunologist (We're on the schedule for January), Physical Medicine specialist (in February for orthotics), and continue with her weekly therapies.<br />
If some other issue should pop up, we'll deal with it then.<br />
And we should be starting the mito cocktail after our next appointment with the neurogeneticist.<br />
But as far as more DNA testing goes, we're going to hold off.<br />
We'll give it a year, and if we still don't have answers, we'll do more testing then.<br />
But from what I understand, if more issues with Rae arise, they may be able to diagnose her with the testing she already has done as well as by her symptoms.<br />
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It stinks though.<br />
It's so frustrating to be living at the doctors office and doing therapies and gtube feedings and watching her get so many infections without having a FIRM reason why it's all happening to her.<br />
And it makes it really hard for Big S and I to think about the future. What if we do want to have another baby at some point? Will that baby have the same issues Rae does? Will my sisters kids have issues? It just is so aggravating to not have a reason for all that is going on with her.<br />
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I know eventually she could get better (preferably!), or she could get diagnosed. But for now, living with <b>whatever</b> this craziness is, is not the ideal situation.<br />
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I thank God for that smile though. It reminds me that through all this, she's still doing alright.</div>
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<br />Melissahttp://www.blogger.com/profile/02292122189017306521noreply@blogger.com0tag:blogger.com,1999:blog-7979887075529673396.post-70256221442617408122014-12-09T16:02:00.001-05:002014-12-09T16:02:28.190-05:00Tube Feeding at DisneyWhen I was looking for tips for taking a tube fed kid to Disney I couldn't find much information. So I'm hoping this can be a resource to someone else.<br />
This is Rae.<br />
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Rae is tube fed by her pump about 15 hours a day. She is hooked up mostly at night then half of the day. We adjust it as needed as long as she gets 700 ml a day.<br />
I don't know why, but I felt much more overwhelmed going to Disney with Rae's gtube than I did when we <a href="http://2by22.blogspot.com/2014/03/disney-magic.html">went back in March</a> with her NG tube. I think it was partially the staph infection she's STILL fighting (No joke, she's been on antibiotics continuously since the beginning of october and has been hospitalized to try to clear it up and it's still not better.) or maybe that until the day before we left, I had never changed her gtube on my own, so I was afraid of it getting pulled and not having a clue of what to do.<br />
But I learned and we went and it was an incredible trip!<br />
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As far as her supplies went, this is what I brought:<br />
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3 backpacks, extra Mic-key, 2 extensions, 5 ml syringes, gloves, gauze, 60 ml syringes, (in case we would do bolus feeds) 10 bags, her pump, charger, and gtube pads (Disney Princess ones of course!).<br />
**Not pictured, we also brought her pole, 3 cans of her formula, and ice packs to keep her formula cold.**<br />
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I did have someone on the Feeding Tube Awareness page suggest bringing a command hook to hang up the bag and put the pump on a chair next to it instead of lugging around her pole. But Rae is a horrible sleeper, wakes up distraught a few times a night and I wouldn't trust a command hook to hold up the bag for her at this age.<br />
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In the parks we ended up going to Guest Relations and explaining about Rae's tube and they gave us a red pass to be able to use the stroller as a wheelchair. This meant we could keep her in the stroller when we walked through the lines. This was especially ideal for the times she was hooked up to her pump so she didn't have to have as much strain on her back for those long waits. They also have handicap seating available in all their theaters so we could sit in the back with her in the stroller during those times as well. Make sure the red band is visible whenever you are about to go in a line though, almost every time we went in to a line with the stroller they would try to redirect me to stroller parking before they saw the band.<br />
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On our last day we chose to do bolus feeds after a long week of lugging around her backpack and pump. There are baby care centers where moms can nurse, change diapers and take care of any needs a child has and I'm sure it would be a great place to set up a feed, but it was pouring down rain when we needed to do one, so we set it up outside on a bench. No one stared or said anything rude, so I considered that a win!<br />
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This is what we brought into the parks everyday just in case anything were to happen to her gtube:<br />
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Backup mic-key, gloves (like I said, she has a staph infection, so we have to be extra cautious), gauze, KY, (disclaimer for non-tubie parents: this is for making the tube easier to go into her stoma, not for a quickie. I don't think Mickey would approve) 60 ml syringe, 10 ml syringe to fill the balloon with, formula, extra bag, and an extra extension.<br />
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We drove down to Orlando from Northern VA. It takes about 14 hours to drive down. We did skip her evening feed that night, because we haven't quite figured out how to keep her from unplugging herself when we're in the car. This just meant we did a few extra hours the next day during the day.<br />
I don't have any tips about flying with tube feeding stuff. Driving stressed me out enough, I couldn't imagine trying to get all her supplies on a plane...<br />
Overall though the trip went great and tube feeding wasn't nearly as hard as I thought it would be in the parks!<br />
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MMelissahttp://www.blogger.com/profile/02292122189017306521noreply@blogger.com0tag:blogger.com,1999:blog-7979887075529673396.post-6176114017304084012014-12-09T15:43:00.003-05:002014-12-09T16:02:53.149-05:00DisneyI love Disney World.<br />
I could only vacation to Disney for the rest of my life and still love it.<br />
I'm a Becker by marriage, but still a Bearden, so Disney runs through my blood (or I was brainwashed as a small child. Not sure.)<br />
So we took the kids again.<br />
This is Little S's fourth time and Rae's second. My goal is for them to go to Disney at least 20 times before they graduate.<br />
We are making good time on that one.<br />
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We had 7 full days with my sister, 6 days in the park, 5 nightly interruptions from Rae, 4 Mickey bars for Little S, 3 meltdowns, 2 days of driving and 1 flu. ("One flu?" I'm bad at sentences.)<br />
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The kids had an absolute blast this time. We went with no real expectations, no pressure to make anyone happy but the kids (as opposed to our big family trips, which is hard to coordinate 12 people all with different expectations of what we NEED to do.)<br />
So in that respect, we could have just wandered around the parks watching Rae lose her mind over any and every Elsa/Rapunzel/Ariel thing, and listening to Little S give us a full detailed run down of everything he had already done, and it would have been a successful trip.<br />
But we actually got a lot done.<br />
Actually, we got it all done. Everything we wanted to do was seen /rode at least once. And I even got some good pictures. What what?!<br />
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Buy ALL the Frozen things.</div>
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Toy Story Mania was ALL Little S talked about the past month.</div>
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Rapunzel's tower</div>
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Little S was surprisingly tall enough to ride Star Tours with Big S. I remember walking around Disney on our honeymoon and Big S talking about how excited he was for Little S to be big enough to ride this.</div>
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Look at that face. Look at it!</div>
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Disney haircut on Mainstreet. Had to get the pixie dust, obviously.</div>
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The kids absolutely loved seeing Auntie Bubba all week.</div>
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Look at that stud. </div>
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But of course we're Beckers...so it wasn't all smiles.</div>
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Whatever. It was magical.</div>
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Just a heads up, this week will be filled with posts about Disney. I couldn't find much about tube feeding at Disney, being vegan at Disney, and I've had quite a few people ask for tips for planning a trip for toddlers. So be prepared to be flooded with my Disney trip all up in your face. You're welcome in advance.Melissahttp://www.blogger.com/profile/02292122189017306521noreply@blogger.com0tag:blogger.com,1999:blog-7979887075529673396.post-62256377457462048452014-11-25T15:55:00.003-05:002014-11-25T15:55:59.582-05:00Giveaway Winners!Congrats to all the giveaway winners!<br />The winners were chosen by Random.org, by entering your name as many times as you qualified for an entry (up to 5 entries).<br /><div>
The winners were chosen by if they had specified a specific prize in their comment, if not they were chosen randomly.</div>
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Please email me to claim your items!</div>
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<div style="text-align: center;">
Photo session with<a href="https://www.facebook.com/kathrynsiebertphotography"> Katie Seibert Photography</a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOQal2eXkxg_BoS2ll9BOkj04t_hy4sBKZuHh9hhCem7ft1nc76lKBWtb7RlhuRcPMrpiYYwlZEjzfRbChilbXH7pGGCPwr2zCbIFjuoYwqa26wxfVroSO7TyQ8rF6pgFtyQ4rlr0g-Nel/s1600/001-24.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOQal2eXkxg_BoS2ll9BOkj04t_hy4sBKZuHh9hhCem7ft1nc76lKBWtb7RlhuRcPMrpiYYwlZEjzfRbChilbXH7pGGCPwr2zCbIFjuoYwqa26wxfVroSO7TyQ8rF6pgFtyQ4rlr0g-Nel/s1600/001-24.jpg" height="266" width="400" /></a></div>
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<b>Jacquelline Roper</b></div>
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<a href="https://www.facebook.com/BumbleABCinc">Bumble ABC</a> open play session</div>
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<div style="text-align: center;">
<b>April Mosher</b></div>
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<a href="https://www.facebook.com/bizzysprettythings">BizzysPrettyThings</a> necklace</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDi8XN83ZBFTCas_RWCyEuCVVGR3zS1GsXDt0V6AdULwlwNF5res5JyA4ZjE2glSdcMm-VnJuMF1PKT7XvikGWIDFRX31iPUFAjnm73Q5Ek6g6-k4wdF2LIosOyPUtldekBvzXC__MhNhH/s1600/10816030_10152831693404089_714856463_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDi8XN83ZBFTCas_RWCyEuCVVGR3zS1GsXDt0V6AdULwlwNF5res5JyA4ZjE2glSdcMm-VnJuMF1PKT7XvikGWIDFRX31iPUFAjnm73Q5Ek6g6-k4wdF2LIosOyPUtldekBvzXC__MhNhH/s1600/10816030_10152831693404089_714856463_n.jpg" height="400" width="300" /></a></div>
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<div style="text-align: center;">
<b>Jenn Becker</b></div>
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<a href="https://www.facebook.com/amandicuresbyjamberry?pnref=story">Amandicures</a> Jamberry kit</div>
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<div style="text-align: center;">
<b>Keri Tolliver</b></div>
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<div style="text-align: center;">
<a href="https://www.facebook.com/allthingsgirliebowtique">All Things Girlie Bowtique</a> bows</div>
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<b>Clarissa Quinn</b></div>
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<a href="https://www.facebook.com/thecottoncandyandco">Cotton Candy & Co.</a> necklace and earring set</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJnUar29cBoj_mq97jsCR84AVIXcGCYW98SqeglRPBNcfRFSK-3WeYlR0R2dQ05C7InuyKHn4N65Qzjfl2F26WZcVELr6ar-FrHtldnAuOzJwQDwhAVm2EK8jTgLaFKqO7pT1ijdeYrVNN/s1600/10811479_10204223722128595_100306715_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJnUar29cBoj_mq97jsCR84AVIXcGCYW98SqeglRPBNcfRFSK-3WeYlR0R2dQ05C7InuyKHn4N65Qzjfl2F26WZcVELr6ar-FrHtldnAuOzJwQDwhAVm2EK8jTgLaFKqO7pT1ijdeYrVNN/s1600/10811479_10204223722128595_100306715_n.jpg" height="400" width="400" /></a></div>
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<b>Alma Higgason</b></div>
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<a href="http://marcie.myshaklee.com/us/en/">Shaklee Cleaners</a> </div>
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<b>Helen Lyons</b></div>
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<a href="https://www.facebook.com/simplykaren123?pnref=story">Tastefully Simple</a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimlpwi3geekexT7r0n_Qjwfp3Fqb3wEr83V5mlqiA2KFLKs8kn7R6954h0n0MUya6jh-CAm2L7wy6rUSQC8mlqperb2r4Q1ikPFf48K2QA52SsOGAdhiRDNzQz6vCGlzEaCyNJmgYxDfYV/s1600/10805443_10152872712008308_1108392042_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimlpwi3geekexT7r0n_Qjwfp3Fqb3wEr83V5mlqiA2KFLKs8kn7R6954h0n0MUya6jh-CAm2L7wy6rUSQC8mlqperb2r4Q1ikPFf48K2QA52SsOGAdhiRDNzQz6vCGlzEaCyNJmgYxDfYV/s1600/10805443_10152872712008308_1108392042_n.jpg" height="400" width="400" /></a></div>
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<b>Amanda Higgs</b></div>
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<b><br /></b></div>
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<a href="https://www.facebook.com/hawtmamasllc">Hawt Mamas </a>scrub/body butter</div>
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<b>Katy McClelland</b></div>
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Please take a minute to thank our mamapreneurs, check out their pages and consider them for anything you may need in the future!<br /><br />M</div>
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Melissahttp://www.blogger.com/profile/02292122189017306521noreply@blogger.com1tag:blogger.com,1999:blog-7979887075529673396.post-41661882359194758222014-11-19T14:34:00.003-05:002014-11-19T14:50:51.940-05:00Mamapreneur GiveawaysI like my MOPS group (that's "Mothers of Pre-Schoolers").<br />
MOPS is, probably, one of the best things that's ever happened to me.<br />
Once upon a time, I was 20, barely married and accidentally pregnant with Little S. I tagged along, mid May in 2011, with my big sister to a MOPS meeting where I sat awkwardly, wanting to scooch closer to my sister (I mean, it's not like I could have hidden behind her anyway. I made sure of that by eating a box of toaster strudels a day for the last 4 months of my pregnancy). I sat at a table full of mature, pulled together moms, with their age appropriate child-barring timelines as they sipped their coffee so elegantly over conversations of poop stained jeans and toys thrown directly in the toilet with such intent you can't bear to do anything but laugh, or so they said.<br />
<i>"This is weird," </i>I thought. Oh, 20-year-old-M...so young...so naive.<br />
Amongst the fresh-faced mothers, the seemingly perfect wives and the graceful women I saw before me, I found my niche.<br />
Not once was I faced with scowls of "Well, if you had waited longer...," or, "Little S was a mistake, having a baby at 20 is ridiculous."<br />
Instead I forced these beautiful moms to love me with my self deprecating humor and tendency to invite myself to other peoples play dates until they were forced to like me.<br />
Yes, a real charmer, I am.<br />
I quite enjoy MOPS.<br />
So I obviously jumped at the opportunity to share their talents with you.<br />
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Let's start, shall we?<br />
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Mini photo session by <a href="https://www.facebook.com/kathrynsiebertphotography">Katie Seibert Photography</a>.<br />
Worth $60, a mini photo session for 30 minutes includes 10 digitally edited photos from Katie. She did our pictures a few weeks ago and I just love this shot!<br />
Check out more of Katie's work and consider <a href="https://www.facebook.com/kathrynsiebertphotography/info">booking a session.</a><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj88LxXR0ev8UrIjjQdx55yU41S6Q7lI3cQLXA7qKaVXI5KL2FgEKW_eJVOS2EWXaY0JzVrrsAUYPkCpB3KEqL-jULIHCHi7Pum76KmzAC8i2ic3keH3Q_va-_NW_Jl7bh5YgrKhROpuwsZ/s1600/001-24.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj88LxXR0ev8UrIjjQdx55yU41S6Q7lI3cQLXA7qKaVXI5KL2FgEKW_eJVOS2EWXaY0JzVrrsAUYPkCpB3KEqL-jULIHCHi7Pum76KmzAC8i2ic3keH3Q_va-_NW_Jl7bh5YgrKhROpuwsZ/s1600/001-24.jpg" height="266" width="400" /></a></div>
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Open play Session at <a href="https://www.facebook.com/BumbleABCinc">Bumble ABC</a>.<br />
Bumble ABC is a child enrichment company that enhances child development and encourages the love of learning and creativity, for children ages newborn to 6 years old. They have locations in both Lake Ridge and Stafford (VA).<br />
I took my babies here the other day and let me just say, Little S could have played there all day with the rocket launcher and the flight tube!<br />
Register for Open Play or a Caregiver and Me class <a href="http://bumbleabc.com/">here.</a><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrdYiX81NC0XyZVfwECrXoMY6CISCJcykxDZYTSl-1Q6PPNoxCRxzFJnTHMJeLmB7BLHp-MUjL6ZMrhvz0S2-smYSOj08aKznLhFDK_cy5IDbVQJW6u_Vs0g9V8cNDQizPiBJAYb3YRZRf/s1600/1922225_384274741721681_3343281528547623133_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrdYiX81NC0XyZVfwECrXoMY6CISCJcykxDZYTSl-1Q6PPNoxCRxzFJnTHMJeLmB7BLHp-MUjL6ZMrhvz0S2-smYSOj08aKznLhFDK_cy5IDbVQJW6u_Vs0g9V8cNDQizPiBJAYb3YRZRf/s1600/1922225_384274741721681_3343281528547623133_n.jpg" height="381" width="400" /></a></div>
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(This is one of Rae's best buds, Chloe, at BumbleABC)</div>
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Winter Wonderland Necklace from Kate Lawler at <a href="https://www.facebook.com/bizzysprettythings">BizzysPrettyThings</a>.<br />
With a 4 year old and a set of twins, Kate still manages to find time to make some super cute jewelry. She's donating this necklace to one lucky winner!<br />
Check out more of her craftiness <a href="https://www.facebook.com/bizzysprettythings">here.</a><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhi-AcXshcPoog9oNI2iHFuQSR7gvm7q8ZqIS4sPa1waDYNAWansP1qd0tTuJU-2o774WDUE2e6mJUbbXrwr0rMHrXWD3Xjrrlq3t7Zu5WDj9cDt6aU6eCJd06Etx9O1YepbTBLI3PW02tC/s1600/10816030_10152831693404089_714856463_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhi-AcXshcPoog9oNI2iHFuQSR7gvm7q8ZqIS4sPa1waDYNAWansP1qd0tTuJU-2o774WDUE2e6mJUbbXrwr0rMHrXWD3Xjrrlq3t7Zu5WDj9cDt6aU6eCJd06Etx9O1YepbTBLI3PW02tC/s1600/10816030_10152831693404089_714856463_n.jpg" height="400" width="300" /></a></div>
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<a href="https://www.facebook.com/amandicuresbyjamberry?pnref=story">Amandicures by Jamberry</a> from Amanda Higgs.<br />
Jamberry nail wraps really need no introduction. They're simple, and affordable nail wraps that come in over 300 designs. Amanda is giving one application kit, a nail wrap sheet and a 10% off certificate if you purchase through her!<br />
You can order Amandicures <a href="http://www.amandicures.com/" target="_blank">here.</a><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjx1ky2mWrIdXHknmRner5WCiHIAkJ7RFEuXqpbzl6LfsiXzaDVn-FOG7tgSPhz4LiUFsphtSs5QbvOxk5xArbcE8uuf5em7O02FgomWMIekmU4LWeIudV1tRckTBaZKwv0SfyvvjV_Zeoe/s1600/10799330_10100156301682512_1348870873_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjx1ky2mWrIdXHknmRner5WCiHIAkJ7RFEuXqpbzl6LfsiXzaDVn-FOG7tgSPhz4LiUFsphtSs5QbvOxk5xArbcE8uuf5em7O02FgomWMIekmU4LWeIudV1tRckTBaZKwv0SfyvvjV_Zeoe/s1600/10799330_10100156301682512_1348870873_n.jpg" height="400" width="300" /></a></div>
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<a href="https://www.facebook.com/allthingsgirliebowtique">All Things Girlie Bowtique </a>by Melissa Bogle.<br />
Rae has like, ten million of Melissa's bows. They're seriously the cutest. She's donating a holiday set of 2 bows! (Ribbon choices will be given to the winner)<br />
You can check out more of Melissa's bows and make a custom order <a href="https://www.facebook.com/allthingsgirliebowtique" target="_blank">here.</a><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEju1rntzwGlyqbqXHIapAhxGY6DT6OE8wLkGPHQ4eIpImmf2g54gIXKJADp6jIa79O6eMqbH2Cn2q-xhofWz-NQeZLo1PiodHFVkmohaiiqCib5io_9gRsMVWjfNmqfk6ebRmFAGbtBH-QE/s1600/10710973_996017067091964_5065340438579419486_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEju1rntzwGlyqbqXHIapAhxGY6DT6OE8wLkGPHQ4eIpImmf2g54gIXKJADp6jIa79O6eMqbH2Cn2q-xhofWz-NQeZLo1PiodHFVkmohaiiqCib5io_9gRsMVWjfNmqfk6ebRmFAGbtBH-QE/s1600/10710973_996017067091964_5065340438579419486_n.jpg" height="400" width="300" /></a></div>
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<a href="https://www.facebook.com/thecottoncandyandco">Cotton Candy and Co.</a> by Tori Hoffman.<br />
Tori is pretty well known around the MOPS crowd for her precious teething necklaces (Actually, myself and another mom unknowingly purchased the exact same necklace from Tori for a pregnant mama's baby shower). But she makes all kinds of couture baby accessories. Tori is giving one winner the choice between these 3 necklace and earring sets!<br />
Check out Tori's other items <a href="http://www.cottoncandyandcompany.com/" target="_blank">here.</a><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGMUylOF4ir8h4eVN5G7VvD3_bKd-4Dpk2msHivqhtRymfGgh6Q84-UfAPiU1GWt07IFWx_3QNYBirkDxBZjpnOOu8UesG6fQ7b-Cu9vnVabKxwBq2ONAQhGJGPCl1-r7JVtoDdhqUqUKq/s1600/10811479_10204223722128595_100306715_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGMUylOF4ir8h4eVN5G7VvD3_bKd-4Dpk2msHivqhtRymfGgh6Q84-UfAPiU1GWt07IFWx_3QNYBirkDxBZjpnOOu8UesG6fQ7b-Cu9vnVabKxwBq2ONAQhGJGPCl1-r7JVtoDdhqUqUKq/s1600/10811479_10204223722128595_100306715_n.jpg" height="400" width="400" /></a></div>
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<a href="http://marcie.myshaklee.com/">Shaklee Natural Cleaners</a> from Marcie Emenheiser.<br />
Marcie is generously giving one winner a set of 3 cleaners by Shaklee- all purpose, window cleaner and a degreaser; as well as a bottle of Basic H2 organic super cleaning concentrate (mixes up to 48 gallons of safe, powerful, all purpose cleaner!)<br />
Check out the other things Shaklee has to offer <a href="http://marcie.myshaklee.com/us/en/" target="_blank">here.</a><br />
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<a href="https://www.facebook.com/simplykaren123?pnref=story">Tastefully Simple</a> from Karen McKewon.<br />
Tastefully Simple offers fast and delicious foods that require 2 or less items to prepare. Karen has donated both a Classy Chocolate Pound Cake package and a Buttered Rum Sauce. <b>Uh, YUM.</b> I might just steal this one from the winner...<br />
Order from her <a href="https://www.tastefullysimple.com/web/kmckeown1" target="_blank">here.</a><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSEey72plxH5qUMLF_6vG9DgkgZCj2gKkp2tdpvVp6IroaZ8gwKxDCI5LQgykU0az1HTePsig_O7iVdcHkUhfcgmlzbIe9gY-wp5RW8h8hFxBjlWl0XiO9yINQYNAUqV7rC5eJDpyBjeJR/s1600/10805443_10152872712008308_1108392042_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSEey72plxH5qUMLF_6vG9DgkgZCj2gKkp2tdpvVp6IroaZ8gwKxDCI5LQgykU0az1HTePsig_O7iVdcHkUhfcgmlzbIe9gY-wp5RW8h8hFxBjlWl0XiO9yINQYNAUqV7rC5eJDpyBjeJR/s1600/10805443_10152872712008308_1108392042_n.jpg" height="400" width="400" /></a></div>
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<a href="https://www.facebook.com/hawtmamasllc">Hawt Mama's LLC </a> Mango Love gift set from Krystal Glass.<br />
So I kind of want to live in the containers of Krystal's body butter tubs. Probably by far the best smelling stuff in the entire world. She's donating the Mango Love body butter as well as a body scrub to one lucky winner!<br />
Order <a href="http://hmallnatural.madefreshly.com/page/about-hawt-mama-s" target="_blank">here.</a> I'd recommend the Oh La La!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEin5u1QKWQJeP1VYjObDxPrXzjJiJ3TnB5wBFDD_LxuJULvy_cMNPHFy-ks8abvPTRgBrkbtxp8QJIRSlGcInCwjoAiIaShHKnejeKNW9aJ0E4EeA8ja65t3asuMKXZ2Xb7F9I52iMgb717/s1600/52dd7208af0b5img_1642_large.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEin5u1QKWQJeP1VYjObDxPrXzjJiJ3TnB5wBFDD_LxuJULvy_cMNPHFy-ks8abvPTRgBrkbtxp8QJIRSlGcInCwjoAiIaShHKnejeKNW9aJ0E4EeA8ja65t3asuMKXZ2Xb7F9I52iMgb717/s1600/52dd7208af0b5img_1642_large.png" height="320" width="320" /></a></div>
<br />
OKAY! So lots to giveaway here!<br />
<br />
<br />
3 ways to win:<br />
One. (This one is required) Leave a comment ON THE BLOG with the item(s) you'd most like to win. Want to be entered in each one? Just say "I want it all!" and I'll make sure you are entered in each one.<br />
Two. Share the post on your Facebook. Please, please, please make sure it's <b>PUBLIC</b> so I can see your entry. This is only necessary if we aren't Facebook friends...if we are then the public thing doesn't matter. I can <strike>stalk you</strike> see it anyway. (This gives you 2 extra entries for each giveaway!)<br />
Three. Like or leave a comment on one of the mamapreneurs Facebook pages! This will equate to another 2 extra entries to the giveaway!<br />
<br />
Doing all three will equate to 5 entries to win in each giveaway.<br />
Giveaway closes at midnight on Sunday (11/23).<br />
A post with winners listed will be up by Noon on 11/24.<br />
Winners will be picked via Random.org.<br />
<br />
Good Luck!!<br />
<br />
M<br />
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Melissahttp://www.blogger.com/profile/02292122189017306521noreply@blogger.com21tag:blogger.com,1999:blog-7979887075529673396.post-72848568877276018142014-11-17T15:16:00.002-05:002014-11-17T15:18:33.663-05:00Rae is.<div>
It was Saturday, almost past 11 PM.</div>
Rae did that thing she always does.<br />
<div>
She laid her head down on my chest for just a moment, before abruptly jolting up and stared at me.</div>
<div>
She just stares and I wonder what she's thinking.</div>
<div>
She's probably thinking that I'm a sucker for letting her stay up so late (I kind of am).</div>
<div>
She laid down again and wrapped her fingers with mine for just a minute before deciding she wants to poke my eyes instead.</div>
<div>
"Love you, mama" she says.</div>
<div>
That's her new thing, just randomly telling me she loves me.</div>
<div>
It's kind of the best.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBIB4Gc2NkPU0YMxSOBihFluFGMbbCvy7XGYWDLl8iMqbtSepKc5FvjtdCWb1yXEGHPPXlbGBLj6WjgeR5hiZzVxJ3MsAzLmyO07RPQJKmSANz5xfciT4uY1RzQA2lozBzzjmumpINDwFe/s1600/photo+3+(2).JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBIB4Gc2NkPU0YMxSOBihFluFGMbbCvy7XGYWDLl8iMqbtSepKc5FvjtdCWb1yXEGHPPXlbGBLj6WjgeR5hiZzVxJ3MsAzLmyO07RPQJKmSANz5xfciT4uY1RzQA2lozBzzjmumpINDwFe/s1600/photo+3+(2).JPG" height="300" width="400" /></a></div>
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<div>
Despite everything she's gone through in the past 14 months, she's still just a pretty normal toddler.</div>
<div>
And sometimes I even forget that (that's kind of the point of this post, to remind myself). Through what feels like, rushing from appointment to appointment and therapy after therapy. Through spending afternoons on the phone scheduling and confirming appointments and checking up on lab work and opening bill after bill. Through checking on a beeping feeding pump and bags of formula in the middle of the night it can feel like she's a patient even at home.</div>
<div>
<br /></div>
<div>
She is anything but.</div>
<div>
<br /></div>
<div>
She laughs.</div>
<div>
She is smart.<br />
She's messy.</div>
<div>
She loves so deeply.</div>
<div>
She's feisty.</div>
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She is tough.</div>
<div>
She yells.</div>
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She's funny.</div>
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She thinks she's a princess.</div>
<div>
She's lovely.</div>
<div>
She cries.</div>
<div>
She snuggles.</div>
<div>
She's beautiful.</div>
<div>
She's one of my most favorite people in the world (Right behind Jesus and tied with Little and Big S).</div>
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<div>
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<div>
Sometimes (okay, a lot of times) I worry about her. I fear her body failing her, if not now, then in the years to come. I can see the bad days where she cries, pointing to her legs saying "It hurts. It hurts!" I get overwhelmed with yet another infection she has to fight. I rehash in my mind what all she's going to go through in the <a href="http://2by22.blogspot.com/2014/11/slowly-but-surely.html">next few months.</a> I sink into my husbands arms at the end of the day, feeling defeated once again, and questioning "WHY RAE?". And I worry that I'm not the one equipped to raise her.</div>
<div>
<br /></div>
<div>
"I prayed for this child, and the Lord has given me what I asked of him." 1 Samuel 1:27</div>
<div>
<br /></div>
<div>
I know God doesn't make mistakes.</div>
<div>
He gave me Rae and everything she's going through for a reason.</div>
<div>
Even if the only reason was to make me rely on Him more (which, trust me, I am more than I ever have in my entire life).</div>
<div>
All the beautiful things that make Rae, Rae are going to continue to make me enjoy her more everyday.</div>
<div>
<br /></div>
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Yes, Rae is complicated.</div>
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Rae is exhausting sometimes.</div>
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Rae is sassy.</div>
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Rae is a TERRIBLE sleeper.</div>
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<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dwPP-HJBs73HyvbSRkm7RcIGnkXF5lnovxpo9Pi8waep4CXdKieCkbJzwIrKhtiwvJiUVmgwFcLZ-wd9KMUzA' class='b-hbp-video b-uploaded' frameborder='0'></iframe><br />
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But above all, Rae is a gift from God.</div>
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And I wouldn't change her for the world.</div>
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(I mean, except maybe the sleep thing. A few extra hours wouldn't hurt.)</div>
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<br /></div>
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"He will rejoice over you with gladness. He will quiet you with His love. He will rejoice over you with singing..." Zephaniah 3:17</div>
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M</div>
Melissahttp://www.blogger.com/profile/02292122189017306521noreply@blogger.com0tag:blogger.com,1999:blog-7979887075529673396.post-45134621187698363702014-11-09T09:44:00.000-05:002014-11-09T09:44:19.111-05:00WE'RE GOING TO DISNEY WORLD!19 days.<br />
We go to Disney World in 19 days.<br />
<br />
I know, I know. You don't care.<br />
Or you're angry we're going again.<br />
(Yes, we <a href="http://2by22.blogspot.com/2014/03/disney-magic.html">just went in March</a>)<br />
<br />
But this time it's just the 4 of us.<br />
We'll get to visit my sister, Becca for a full week, check out some potential areas we may want to move to, visit some old friends and of course GO TO DISNEY WORLD.<br />
<br />
Originally we were going to wait until just a week out to tell the kids, because I have a feeling I'm going to have to answer "Are we going today?!" about a million times. Then we moved it to 2 weeks out. But after <a href="http://2by22.blogspot.com/2014/11/slowly-but-surely.html">yesterday</a> we just wanted a little joy after the chaos.<br />
<br />
So today it is!<br />
<br />
The reaction from Little S was unexpected.<br />
<br />
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<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dyd7fJmTKo-H6R7pfaPPMGCyHtetzAnySBy9gLXViRPllrAKeOdN9TgIp5EbmzgqE50sB-l04S-Q5CjO9bkiw' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>
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Well, not completely unexpected. Note to all, don't show your easily frightened child the Festival of Fantasy parade days before you tell them they're going to Disney. All he has talked about lately is the scary dragon.</div>
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(This one.)</div>
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But within a few minutes, I think it finally clicked for him.</div>
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("Auntie Bubba" is what the kids call my sister.)</div>
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Okay, so here's a few pictures of how we told them:</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUdLnzT9TFgKjX-JdjqBvXVvWSsNVQfpKpPn7Q0PRrALKfScKGs-aCyNMdgDZEKg2QPCRoCgwExev5Z7AsL4nPi095q3-KSbLdURpt3e7qUAi7wfmf0Rz2XjOykCdMtwXDjITt6ZK2jzio/s1600/disney3.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUdLnzT9TFgKjX-JdjqBvXVvWSsNVQfpKpPn7Q0PRrALKfScKGs-aCyNMdgDZEKg2QPCRoCgwExev5Z7AsL4nPi095q3-KSbLdURpt3e7qUAi7wfmf0Rz2XjOykCdMtwXDjITt6ZK2jzio/s1600/disney3.JPG" height="300" width="400" /></a></div>
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Yes, I know. My handwriting is terrible.</div>
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This is our countdown. Monorail going to Mickey's castle. I just took some pictures out of their coloring book (What kind of monster steals from their kids coloring books?!) I suspect it will take them no less than 24 hours to destroy this.</div>
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The Disney Store had the throws and sweaters on sale from $20 down to $12, then I had a 25% off coupon so I ended up getting each sweater and throw for only $9. The rest are things I found in the dollar spot at Target: Disney cups, socks, board books and activity packs, the baskets are from the dollar store. Planning on filling the buckets with more snacks and a few more treats for the drive down, which is 14 hours.</div>
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Crate paper, balloons, foam board and table cloth all from the dollar store.</div>
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Used our Disney mugs, obviously.</div>
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We let them watch the Disney Junior live show from Hollywood Studios during breakfast. I even made Mickey pancakes, so fancy!</div>
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Oh, and before you think it all went so seamlessly...</div>
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I, like a genius, put a cup full of water in front of a one year old and expected her not to spill it all over herself.</div>
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Then that same one year old was not happy about taking pictures.</div>
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I'm thinking that last picture will be a better representation of what taking 2 small children to Disney World will be like...</div>
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M</div>
Melissahttp://www.blogger.com/profile/02292122189017306521noreply@blogger.com0tag:blogger.com,1999:blog-7979887075529673396.post-57499731594991574362014-11-08T13:58:00.002-05:002014-11-08T15:04:48.043-05:00Slowly, but Surely.Today Rae had a big appointment with the neurogeneticist at Children's National.<br />
We did decide to take her up to <a href="http://2by22.blogspot.com/2014/10/minnie-button-and-kki.html">Kennedy Krieger</a> to be evaluated by a neurogeneticist last month. This was just to get more direction on if a mitochondrial disorder is really on the table, or if we needed to do other testing while we waited to get off the wait list for this specialist at Children's. Kennedy Kreiger was not covered by our insurance, so I'm glad we only had to go one time before an appointment opened up for us today.<br />
We had been on this waitlist since May.<br />
And we'd been told this looked like a mitochondrial disorder from different specialists and our pediatrician since February.<br />
I talk a lot about mitochondrial disease in this post, so if you don't know what it is, please, please please read more <a href="http://www.mitoaction.org/mito-faq">here</a>. This explains mito 1000 times better than I could.<br />
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So our meeting today went really, really well.<br />
Like, I loved this doctor.<br />
And Rae did, too.<br />
She actually sat on her lap, which is shocking.<br />
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So we talked about medical history, though most of it was already covered, since all her records are shared through her other specialists at Children's (which we see a geneticist, a gastroenterologist, a orthopedist, a neurologist. and had seen a cardiologist all through Children's within the last year).<br />
Then we started working on a game plan of how to treat Rae.<br />
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#1 Orthotics. If you remember, <a href="http://2by22.blogspot.com/2014/01/not-diagnosis-but-hunch.html">back in January</a> Rae had an MRI done and was evaluated by a neurologist and an orthopedist about her funky gait and they were talking about the possibility of her having Cerebral Palsy. Praise God the MRI showed nothing, and within a few months of getting on the NG tube, she started walking. Well, while she may be walking, she still does have issues with low muscle tone in her hips, ankles and legs. To me, I don't see it as a major problem and I've been putting off taking her back to the orthopedist since she is already having physical therapy twice a month. I was wrong. Apparently it's not great, and she needs to have orthotic braces to help stabilize her muscles or else her new doctor suspects she will regress further and be fully walking on the outsides of her feet and lose balance even more within 6 months to a year. So that kind of sucks. She already has a gtube, I really didn't want to add anything else uncomfortable to her, but obviously we will do whatever is best.<br />
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#2 Immunologist. She needs to be seen by an immunologist for further testing of her immune system. She has had 3 staph infections in 4 months, as well as countless colds, stomach bugs, fevers, and ear infections. Kennedy Kreiger ordered some routine labs of her immune system, but they did not check her immune system down to a cellular level, which is important in a suspected mitochondrial case, like Rae. Yay more specialists to add to our list!<br />
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#3 Labs. We are going to retest her thyroid levels since she has been having a hard time regulating her body temperature lately. Her hands are constantly freezing as it is getting colder and we have see her lips turn purple a few times. And over the summer, the second she sat in the car she would be dripping with sweat. So apparently this could be a thyroid issue (we've tested her thyroid before and it was fine, but that was 8 months ago) or it could just be another thing caused by the mito. We'll also test some more mito markers (Creatine levels, I think is what she said). She did have a chance to go over her labs with me that we had ordered by Kennedy Kreiger, which was just the lactate levels being elevated (for the 3rd time, they retest this often because apparently this is a easy one to be screwed up, so they retest to make sure it truly is elevated) and some amino acid levels were a little off as well as high acid levels in her blood, which she said is consistent with the lactate levels not being a fluke.<br />
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#4 Up her feeds. Rae's really tiny even with her gtube feeds. Yes, she still eats by mouth. And everything that she eats by mouth SHOULD be enough to sustain a growing child, but somewhere in her body, her nutrition get's absorbed wrong. That's why she has the gtube, to make up for the absorption issues and give her extra calories her body needs to thrive and actually gain weight. She gets an extra 20 ounces of high calories and predigested (read: expensive) formula through her tube every night. Well, even on the feeds she has now, her neurogeneticist thinks she could gain more to help give her even more energy. So we're going to up her feeds, which means back to the day feeds and backpacks.<br />
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#5 Mito cocktail. One of the "treatments" for mito (there is no cure, only thing we can do is treat the symptoms she has as they come up and try to slow the progression of the disease) is a high dose of vitamins and supplements that sometimes can help mito patients immune systems and energy levels. We will start her on the cocktail as soon as we get her labs back.<br />
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So, that's the plan. She has NOT been officially diagnosed with a mitochondrial disorder. We are still waiting to see if we get more conclusive genetic testing that shows she for sure has it. That, or we wait until she gets worse and has more muscle systems affected, which is hardest thing about all this.<br />
Her doctor today called her a "sick kid".<br />
She talked about how we don't know what Rae's prognosis is yet.<br />
She could, and hopefully will stay consistent for a really, really long time. We can hope that she just has to stay in touch with the doctors she has now, and nothing else comes up. We can pray that it's not mito.<br />
But then we're told the reality that her symptoms match that of a mitochondrial disorder.<br />
And it's a waiting game.<br />
It's waiting for a diagnosis.<br />
And I'm hoping and praying, that in our lifetime, we do find a cure.<br />
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But for now, at least we have a plan.<br />
And finally a doctor who is completely and 100% proactive about helping us take the best care of Rae as we can.<br />
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"'For I know the plans I have for you', declares the Lord. 'Plans to prosper you, and not to harm you. Plans to give you a hope and a future.'" Jeremiah 29:11<br />
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MMelissahttp://www.blogger.com/profile/02292122189017306521noreply@blogger.com1tag:blogger.com,1999:blog-7979887075529673396.post-33653566400664513832014-11-05T11:14:00.000-05:002014-11-05T11:14:14.682-05:00This is Why We Can't Have Pinterest Things.I desperately try to be <i>that</i> mom.<br />
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You know the one...</div>
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The one with perfectly organized toy bins and the walls of their homes decorated with perfected kids crafts and beautiful seasonally appropriate decor. She's the mom you go into her home and feel inspired to go on Pinterest (or to turn her picture frames just a little askew to make yourself feel better...)</div>
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You pull out your iPad with the sticky finger prints covering it, pull up Pinterest and get smacked in the face with these FANTASTIC ideas that are guaranteed to make you a million times more awesome.</div>
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So you Pinterest it up.</div>
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And then...sobbing.</div>
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Always the sobbing.</div>
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I don't think I've ever used an idea from Pinterest that didn't end in at least 2 of the 4 of us crying and threatening to join a new family.<br />
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I mean the crafts we attempt are way out of our league.<br />
It seems so simple when you look at it, just a little footprint and a few hand prints.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgq8UROZ5oS-tsMNzl8wJugV8dXqP4T4M5iWyj3R7WMSPtr9wRN_N7mgGZ2P-SMvMTU_giZ5w0r3uDawr1Fz4uGvArGpKcKfgOc5YnVqzjgZwRZok3S3kwNshcqiBY5eHX9gxht3U7zU1js/s1600/IMG_7794.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgq8UROZ5oS-tsMNzl8wJugV8dXqP4T4M5iWyj3R7WMSPtr9wRN_N7mgGZ2P-SMvMTU_giZ5w0r3uDawr1Fz4uGvArGpKcKfgOc5YnVqzjgZwRZok3S3kwNshcqiBY5eHX9gxht3U7zU1js/s1600/IMG_7794.jpg" height="400" width="266" /></a></div>
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Then you remember, <i>oh yeah, children are little Houdini's, </i>as they weasel out of your death grip trying to keep the paint off the walls. And my children don't know how to follow directions. "SPREAD YOUR FINGERS!" apparently means slab your hand down on the canvas and smear it. Yes, perfect. Thank you.<br />
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Let me tell you, the only things I gave thanks for during this craft was when Little S said "Mom, his nose is just not right. It's just not right." Well, first of all son, that's his mouth and not his nose anyway. And secondly, you're the one whose hand prints look like a 3 year old did them...so....who has the last laugh now? Huh?</div>
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It's fall, so I'm trying to do all the fall things you're SUPPOSED to do.</div>
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Leaf printing. It's a classic. </div>
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Alright, let's psych this project up:</div>
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Let's go get some leaves and then we can color over them! What kind of leaves should we get?!</div>
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Little S: Mom... I just wanted a blue leaf. Not a brown one. Can we go watch TV?</div>
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Pinterest, let's get something straight, leaf rubbing isn't a science. You get a leaf, you get some paper and a crayon. You take your paper, cover your leaf with the paper then color it. That's it.</div>
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But this is how Little S did his.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzqmilRsEyCFsOuJFaOVe-VvzR8bbBEYdhofu9GgK8Xh7tA0MM-ph5EL5UyeAtctlF_ggQRi6sAXJX1ewmEm3LgzAZJpytqj6HhLPuWj9pYUVdj8WUiKac4Dh6pUd9t6feCsxSKFT0KwuO/s1600/photo+3+(1).JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzqmilRsEyCFsOuJFaOVe-VvzR8bbBEYdhofu9GgK8Xh7tA0MM-ph5EL5UyeAtctlF_ggQRi6sAXJX1ewmEm3LgzAZJpytqj6HhLPuWj9pYUVdj8WUiKac4Dh6pUd9t6feCsxSKFT0KwuO/s1600/photo+3+(1).JPG" height="298" width="400" /></a></div>
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Actually, that's giving him too much credit. I did the leaf rubbing and he did the scribble then asked for Pirates Booty and fruit snacks.</div>
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But Pinterest just wont let you fail at just crafts.</div>
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No, no. You have to fail at everything.</div>
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Photography:</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcM-QX4QrZZKrSyAGAkU3ojynnmmazCxCX9yaisvrrN04QRjn5ijm4QiiCyuo3AbgcquROb2_J7EeB4IJHcAu7rGRUbmwxYijYnCWaoVwZ-Nxdc1U55zorNqs1BjOtj4GjwHpnaZeVbUER/s1600/Untitled.tiff" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcM-QX4QrZZKrSyAGAkU3ojynnmmazCxCX9yaisvrrN04QRjn5ijm4QiiCyuo3AbgcquROb2_J7EeB4IJHcAu7rGRUbmwxYijYnCWaoVwZ-Nxdc1U55zorNqs1BjOtj4GjwHpnaZeVbUER/s1600/Untitled.tiff" height="277" width="400" /></a></div>
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Aw what a cute picture of my children watching TV together being blurred by Rae's hand that's about to smack Little S upside the head for some smarties. Oh, memories.</div>
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Organization:</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTGfxtDLCV99Py4155XmglPUDgGud9RSAjFMyWb8UZg5y26Nlx4u3uySUnRTuFbhDcEyfnIPvunyd_Gi80zE5AIi21p3uRlDLpgoQbGvwu6D7BIm7D-GfTdlSoY36IYxtxFPlE7u7JvpEo/s1600/15.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTGfxtDLCV99Py4155XmglPUDgGud9RSAjFMyWb8UZg5y26Nlx4u3uySUnRTuFbhDcEyfnIPvunyd_Gi80zE5AIi21p3uRlDLpgoQbGvwu6D7BIm7D-GfTdlSoY36IYxtxFPlE7u7JvpEo/s1600/15.jpg" height="400" width="265" /></a></div>
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Got it, bins. Buy all the bins. Put stuff in them. Whatever.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaIQURIOZgeaGffDPT9D9oyb1EN4_YW7wVZLdb6iB4tQqziQCNYmYxNzqpXG4vMKQLKJA44vV_xc7p7OuqBz-y8cixo2jojXDtabQ7nqIfP0LU2ckmmEUwQ3EjmcRtcwcsfxiXD7-VXCOP/s1600/photo+4+(1).JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaIQURIOZgeaGffDPT9D9oyb1EN4_YW7wVZLdb6iB4tQqziQCNYmYxNzqpXG4vMKQLKJA44vV_xc7p7OuqBz-y8cixo2jojXDtabQ7nqIfP0LU2ckmmEUwQ3EjmcRtcwcsfxiXD7-VXCOP/s1600/photo+4+(1).JPG" height="400" width="298" /></a></div>
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Good. I did one four months ago.</div>
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This is my pantry now...</div>
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So yeah, I kind of suck at Pinterest kids crafts, but don't let that fool you. I suck at grown up crafts too.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHsbX79VWn7dqFrm8nCb2HDVzVHlPjQXESrjHczqMo2UMB3-zrAQi0kZq0bhSAf0uDfTakqo3GKTfnHzLTmkezpld8_1WoyO_6C9ihyphenhyphenXO2dhOF42k31HZNvTjiKodwEPQfR7HMikGyVLyn/s1600/001502afc2c9efe9d6413fa4b72d750e.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHsbX79VWn7dqFrm8nCb2HDVzVHlPjQXESrjHczqMo2UMB3-zrAQi0kZq0bhSAf0uDfTakqo3GKTfnHzLTmkezpld8_1WoyO_6C9ihyphenhyphenXO2dhOF42k31HZNvTjiKodwEPQfR7HMikGyVLyn/s1600/001502afc2c9efe9d6413fa4b72d750e.jpg" height="400" width="121" /></a></div>
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Let's not wait this out. I'm going to go ahead and declare that this is not how this was supposed to look.</div>
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And lastly, the reason I shook my fist in fury at my Pinterest board this morning:</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmoBYIlmCWsWpeZMjBnJEp_ukzyXLuygdttoZMWEH1STWV7H6DrE9vD0mEihxWM48L0_d-hdRqkykk3yjDM99QEamGHdhyphenhyphenZDwin-qp_qsfc4WAoO8qfWZhHebHezif2r-_FLQDz2xktoFN/s1600/88bf49bcfbf665013fa9e47a8cbb9f0c.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmoBYIlmCWsWpeZMjBnJEp_ukzyXLuygdttoZMWEH1STWV7H6DrE9vD0mEihxWM48L0_d-hdRqkykk3yjDM99QEamGHdhyphenhyphenZDwin-qp_qsfc4WAoO8qfWZhHebHezif2r-_FLQDz2xktoFN/s1600/88bf49bcfbf665013fa9e47a8cbb9f0c.jpg" height="400" width="223" /></a></div>
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Nothing like the sound of hundreds of popcorn kernels falling on your floor and then the one year old trekking them all down the basement stairs to make you declare, "This is why we can't have Pinterest things."</div>
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You win, Pinterest.</div>
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Melissahttp://www.blogger.com/profile/02292122189017306521noreply@blogger.com5tag:blogger.com,1999:blog-7979887075529673396.post-6223238580332333142014-11-02T15:18:00.001-05:002014-11-02T15:26:57.443-05:00How to Vegan.Okay.<br />
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I have a confession.</div>
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It's kind of scary to a lot of people, which is why I try to never talk about it on the blog.</div>
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But it's time you know the truth.<br />
It's been going on for a while now...almost 5 months....</div>
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I'm....</div>
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Vegan.</div>
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I KNOW.</div>
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WHO AM I?!</div>
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If you don't know what a vegan is, it's an incredibly pretentious person who eats no animal products whatsoever (yes, dumb dumb, that includes cheese and eggs and milk.).</div>
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Being vegan (which still feels weird saying, I usually just say I eat a vegan diet.) isn't THAT bad. So in case you ever wondered if you could be a vegan I created a very simple How to Vegan guide.</div>
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Step 1: Throw away all your foods.<br />
Now that you're a vegan all you'll need is some birdseed and bunch of foods you don't know how to pronounce. Tempeh. Quinoa. Quiche (made from tofu, not eggs!). Broccoli. Don't forget to stock up on the condiments too! Fancy things like nutritional yeast and flax seed and soy protein powder to add to everything and anything you eat. The harder it is to say, the better it is for you!<br />
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(I can just taste the years being added to my life!)</div>
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Step 2: Make sure EVERYONE knows you're a vegan.<br />
Everyone knows vegan is latin for <i>I'm better than you</i>. And what better opener to new friendships than making sure everyone knows just how superior you are. Make sure you mention your veganism as soon as possible into any given conversation. People love hearing about your weirdo eating habits! Force it into conservation! Talking about cats? Maybe segue with a mention of how much your tofu scramble looks like cat food. Talking about the weather? Blame your new friends for the polar vortex by saying something about polar bears and animal rights and then you're right back on the vegan track!<br />
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Step 3: Have your cannons at the ready.<br />
Nothing says <i>respect my decision! </i>like arguing about someone else's choice of a diet. Make sure you stock up on B-12 vitamins and Omega 3 Supplements to pelt your opponents with at any moments notice when they talk about what they like to eat. Don't skimp on the name calling either. People <i>definitely</i> respect you more when you call them a murderer for eating animal products. Oh, and make sure you warm up those eye lids for the many overly dramatic eye rolls you need to dish out when you're asked about your protein intake!<br />
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Step 4: Stop working out.<br />
Everyone knows vegans are weak. When your daily allotment of food is only 14 carrots and a tablespoon of humus you're bound to become a weakling. So start acting like it. No more half marathons or working out. You need to conserve your energy for more high impact activities, like peeling butternut squash and making zucchini noodles (but seriously...why is butternut squash so hard to peel?)<br />
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Step 5: Obsess over every single ingredient of everything you eat.<br />
If you accidentally eat something with egg in it, the vegan police WILL know. And they will chastise you for it. Forever. If you're not sure if somethings vegan, just don't eat it. We'd rather you starve than to mess up.<br />
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Step 6: Respond appropriately.<br />
When someone asks you what you DO eat, be sure to lay out the most healthy part of your day. Don't mention the amount of chips and salsa and oreos you eat daily. You want them to think you're healthy, remember? Oh, and yes, my friends. Oreos are vegan. Which I like to think was God's way of saying "I love you plant based dieters" then He'd add a little eye-heart faced emojii and a bunch of plants (I'm assuming God texts...)<br />
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(Full disclosure, I don't really eat christmas trees...)</div>
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Step 7: Pack your lunch.<br />
When you pack food to take with you somewhere, make sure you pack the most obnoxious version of what you usually eat. Say, like I usually eat a salad for lunch with half a bottle of french dressing. But if I were to pack myself lunch to take somewhere I'd probably pack a kale salad with chickpeas and just a tiny splash of lime. Make sure you turn your head when you're dry heaving so no one knows how disgusting it is.<br />
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And lastly,<br />
Step 8: Make sure you have a really stupid reason for going vegan.<br />
Like, maybe you really love animals. (Psh.) Or you care about the effects on the environment (Dumb.) Or maybe changing your diet makes you feel like you're being healthy or whatever (That doesn't even make sense. There's no direct links to diets and health ANYWHERE.) Or maybe you just really, really hate vegetables and have some strange compulsion to spear and eat every plant you see. Whatever your reason is, make sure you shove it down every one's throat and make them uncomfortable.<br />
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<br />
So there you have it.<br />
8 simple steps to becoming the worlds <strike>worst</strike> best vegan.<br />
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PS: Tomorrow is my birthday! You can feel free to send me things like cauliflower and cans of chick peas now that I'm out as a <strike>weirdo</strike> vegan.<br />
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<br />
PPS: I have a joke.<br />
What does a vegan zombie eat?<br />
GRAAAAAAINSSSSS.<br />
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M</div>
Melissahttp://www.blogger.com/profile/02292122189017306521noreply@blogger.com0tag:blogger.com,1999:blog-7979887075529673396.post-18620159367543193232014-10-29T14:55:00.001-04:002014-10-29T14:55:40.664-04:00All of Me.Do you ever get that feeling when you look at something really simple, but it gives you a huge wave of emotion that almost seems kind of silly?<br />
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<br />
I got that today as I sat and looked over my family pictures for the ten thousandth time.<br />
(<a href="https://www.facebook.com/kathrynsiebertphotography/timeline">Katie Siebert Photography. LIKE HER PAGE</a>)<br />
<br />
I'm really lucky.<br />
Like, really, really lucky.<br />
I'm the exception.<br />
<br />
If you don't know my story, it's cliche.<br />
Pastor's daughter gets knocked up in college, drops out and has a shot gun wedding before the baby is born and predispositioned to live a life of misery, poverty and have a life full of ugliness and stereotypes.<br />
I'm not making up that this is how it sounds, because I've actually had people tell me that what I just wrote is EXACTLY what they think of us.<br />
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But here's the kicker; that's not our story.<br />
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Yes, it was just about this time, 4 years ago that I found out I was pregnant.<br />
A sophomore in college.<br />
FINALLY <b>officially</b> dating the guy I had had a crush on since I was a junior in high school (He was a senior and way too cool to date me) for about a year at that point. (I'll be quick to tell you I considered us dating in high school, because we <i>basically</i> were. I made out with his face a lot. But that's neither here nor there....)<br />
Anyway, so I was a sophomore.<br />
And now pregnant.<br />
We had started talking about marriage probably a few weeks into dating a year prior.<br />
In fact, I told Big S I loved him 9 days after we started dating.<br />
It was embarrassing how quickly I clung to him.<br />
We talked about kids.<br />
Having a husky dog.<br />
And moving to Florida.<br />
These were our plans.<br />
AFTER college.<br />
But things don't always go according to plan.<br />
We decided quickly to speed the plans up.<br />
We would get married and raise a baby way ahead of schedule and do it together with no doubt if either of us were committed.<br />
We got engaged.<br />
"Oh how exciting! When is the wedding?!"<br />
In two months.<br />
"Oh.....OOOOHHHH," and the wheels started churning in people's heads as they quickly counted to 9 and stared at my belly.<br />
<br />
I know things we did were backwards.<br />
And I'm not saying it was right by any means.<br />
But this:</div>
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Is not wrong.<br />
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My husband is a fantastic father.<br />
He stepped up when almost every other guy on the planet would have run away.<br />
He got a job.<br />
He provides for our family.<br />
He adores our children, like, it's the most attractive thing about him how much he loves our babies.<br />
And he loves me unconditionally (I mean, seriously, did you see how huge I got when I was pregnant with Little S?!).<br />
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I know pictures can be deceiving, and no, it's not always perfection.<br />
We fight about stupid things.<br />
I get mad when he doesn't help do the dishes.<br />
And he get's mad I keep making all his favorite fattening foods out of tofu and birdseed.<br />
But it works in ways that no one else would understand but us.<br />
And these pictures are the most accurate depiction of Big S when it comes to family time.<br />
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<br />
We should have broken long ago.<br />
But here we are.<br />
Still quoting cheesy song lyrics at each other and him letting me steal his favorite sweatshirts.<br />
Nightly back rubs and looking deep into each others eyes and saying weird compliments (Babe, the whites of your eyes are truly incredible).</div>
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<br />
So yes, we're cliche.<br />
Our family came before it's time.<br />
It's messy.<br />
It's difficult for people to take us seriously.<br />
But it's everything we always wanted.<br />
Things sped up and got really scary.<br />
Things feel out of control with Rae's medical issues and Little S being a crazy 3 year old.<br />
But thank God Big S was there to catch me every time I needed him.<br />
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M</div>
Melissahttp://www.blogger.com/profile/02292122189017306521noreply@blogger.com0tag:blogger.com,1999:blog-7979887075529673396.post-68523600214722294412014-10-16T22:12:00.000-04:002014-10-17T08:37:15.074-04:00IsolationSo in case you're just tuning in, we are in the hospital with Rae.<div>She has a staph infection (third one since June) and E. coli and wasn't responding to antibiotics at home, so her Kennedy Kreiger doctor said to be more aggressive and do IV antibiotics to wipe out the infections quicker.</div><div>So here we are.</div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3QFJAfpZGEQu4bPKFD4a1PPxf_ovVR4e55u1_zIHBsAT0m30QVn8av8tjQ8KhwrWqXcFo_wnfLp3jwkqsPUXQx3SiN9tr-Gb0TOsOhh5hgWiZx3pzdvdmru2xSnkuXQqvOiGpkyyDW4Cw/s640/blogger-image--527621911.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3QFJAfpZGEQu4bPKFD4a1PPxf_ovVR4e55u1_zIHBsAT0m30QVn8av8tjQ8KhwrWqXcFo_wnfLp3jwkqsPUXQx3SiN9tr-Gb0TOsOhh5hgWiZx3pzdvdmru2xSnkuXQqvOiGpkyyDW4Cw/s640/blogger-image--527621911.jpg"></a></div><br></div><div>We are in isolation since staph is a contact infection.</div><div>Isolation meaning neither Rae or I can leave the room and when people come in they suit up like they're going into surgery, or like we are the most repulsive things they've ever seen.</div><div><br></div><div>A few years back Big S and I got hooked on this show called Solitary. It was a reality show type experiment where they put contestants in a small room by themselves and made them do challenges against each other (in separate pods so they only knew how others were doing by the computer telling them) to test their ability to do things alone. You could opt out of a challenge by hitting a button on the wall, but if you were the first person to hit it, you lost the competition and went home. I distinctly remember one of the first challenges in one of the seasons was listening to a screaming and wailing child, which, as you can imagine, in a room all alone, can be quite exhausting. (See where I'm going with this?) I think it only took like 4 minutes before people starting hitting the button and trying to make the crying stop.</div><div><br></div><div>Isolation is kind of like that, but I'm not going to get paid $50,000 if I win. I think the only thing I win is a pass to sleep in one day when we finally get to go home.</div><div>I can't go down the hall, I literally can't even go to the door to hand food service my tray. I tried, she looked at me like I had leprosy, apathetically put on gloves before taking the tray and smugly nudging her head for me to get far away from the door. I'm a disgusting human being, apparently. Last time we were here in June, Rae and I often took advantage of the playroom and the kitchen (it has a coffee maker and cookies,) but apparently they think I'm going to go in there and rub Rae's infected stomach all over everything. </div><div>Which I wouldn't. </div><div>That would be rude.</div><div>Rae can't get down to even play on the floor. She's been dehydrated, so she's been hooked up to fluids or her feeding pump since we got in Wednesday night.</div><div>It's feels a little lonely only having Rae to talk to. Don't get me wrong, she's quite the conversationalist:</div><div>Rae Rae, we have to sit down.</div><div>"No mom"</div><div>Let's play with blocks!</div><div>"No mom"</div><div>We should take a nap.</div><div>"No mom"</div><div>I love you, Rae.</div><div>"No mom"</div><div>Every time her nurses come in I feel like a dog whose human just came home. Ohheyimissedyou.Letstalkaboutthings.Howwasthelastfewhours?Icantbelieveyouleftmeherealone.Ohyesiknowwearestillwatchingfrozen.Pleasedontleavemeeeeeeeee.</div><div>Then my parents and Big S came last night. Which was the high light of my day.</div><div>Big S even stayed and cuddled Rae til she fell asleep so I could have some alone time.</div><div>But the only way to get alone time is in the bathroom.</div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3e7Rgineqc9SSoH1x3v5SLJMqyNw95PQBoQ70cw0wKywUTwuKlF4-eXrFWQHy8nRHMSrfkX3AaGzKOzoyA87zMfL5gvYzBgm9rntopeT3VTRgXCC1FrG77f9Y0aFQSxobTUB4rz66Yd49/s640/blogger-image-1359561011.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3e7Rgineqc9SSoH1x3v5SLJMqyNw95PQBoQ70cw0wKywUTwuKlF4-eXrFWQHy8nRHMSrfkX3AaGzKOzoyA87zMfL5gvYzBgm9rntopeT3VTRgXCC1FrG77f9Y0aFQSxobTUB4rz66Yd49/s640/blogger-image-1359561011.jpg"></a></div><br></div><div>Mmm, nothing says relaxing after a long day of Rae screaming at everyone who touches her saying "I'm mad! I'm sad! All done! All done!" like a dirty bathroom that hundreds of sick kids have used. You know what would really make this a party? If I could just have someone sneeze directly into my mouth. That feels like the equivalent of hanging out in a hospital bathroom.</div><div><br></div><div>I will say though, Rae is always joyful. Even through the pokes, the isolation and the lack of sleep, she is joyful.</div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0X50B8E9VC9A_iICADV7q8aATa0-W9FEW7bGYpnpufCc7eplx2IqmYSxRCcilSxNWgp89DL4RRxHmCscmSQPvKSs9DKfW5eE14WeBjp44F-JId4BimfRyqwF9vGRIyoxGF_kzkhYO7nxw/s640/blogger-image-331322809.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0X50B8E9VC9A_iICADV7q8aATa0-W9FEW7bGYpnpufCc7eplx2IqmYSxRCcilSxNWgp89DL4RRxHmCscmSQPvKSs9DKfW5eE14WeBjp44F-JId4BimfRyqwF9vGRIyoxGF_kzkhYO7nxw/s640/blogger-image-331322809.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhM6WTK9HHXI6k-r68z7HPOiZcYcGNhnMUmky1aKJhQivWvMa0qKM-Cew5i4qDoouemdGoob59txjyPuIB0QBtc2PGdhECJvPK83M8Lkooqi1pkUrxqhIEqmPO8v4Xxf811sCHrpOdQmFg2/s640/blogger-image-684859537.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhM6WTK9HHXI6k-r68z7HPOiZcYcGNhnMUmky1aKJhQivWvMa0qKM-Cew5i4qDoouemdGoob59txjyPuIB0QBtc2PGdhECJvPK83M8Lkooqi1pkUrxqhIEqmPO8v4Xxf811sCHrpOdQmFg2/s640/blogger-image-684859537.jpg"></a></div></div></div></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwhkUKXFa0KJ34Ctwi3rwwbmPdtW645ZzPGxpH_K5-wrlL2fpshfn0Jv8X07-FzRfmR_GlCVfKuZbHOyaakzx9-O2iQnhD66mfjy_yIW1l2Yu5WkqX1L_IfftWIbVoMAZcwKa1vbjEN3Gr/s640/blogger-image-1607156416.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwhkUKXFa0KJ34Ctwi3rwwbmPdtW645ZzPGxpH_K5-wrlL2fpshfn0Jv8X07-FzRfmR_GlCVfKuZbHOyaakzx9-O2iQnhD66mfjy_yIW1l2Yu5WkqX1L_IfftWIbVoMAZcwKa1vbjEN3Gr/s640/blogger-image-1607156416.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Here's to hoping we get to go home tomorrow!</div><div class="separator" style="clear: both;">M</div><br></div><br></div>Melissahttp://www.blogger.com/profile/02292122189017306521noreply@blogger.com0tag:blogger.com,1999:blog-7979887075529673396.post-51679348406589140062014-10-06T14:07:00.000-04:002014-10-06T14:55:45.618-04:00Half. I'm Lazy Like That.So I ran a half marathon yesterday.<br />
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<br />
13.1 miles.<br />
First one since having the babies.<br />
Let me make one thing clear:<br />
I hate running.<br />
I'm not one of those people who runs because they like the rush and feel super cute and athletic when they run.<br />
I'm one of those people who looks like they're being tortured when they run. When I run it looks like someone has filled my shoes with lead bricks and my pants with Styrofoam thigh inserts. Nope, my thighs are just that big.<br />
<div>
I'm not one of those people that runs to be athletic or to win races (because I'm still kind of slow).<br />
Let me make this absolutely clear: I run for two reasons. One, to get the satisfaction of running far, far away from my children for an hour. And two, so I can eat whatever I want.<br />
That is it.<br />
<br />
So I ran this half marathon yesterday and the things that run through your head while you're pounding your feet on the pavement for almost 2 hours are unparalleled.<br />
I'll take you through.<br />
<br />
The starting line:<br />
<i>Let's do this. 13.1 miles. That's just double running 6 and half miles, which is just double running 3 miles, and running 3 miles is easy. This is going to be no problem.</i><br />
<i>Why are there so many people here? You guys like food too? I'm assuming everyone here is only doing this for the right to eat whatever they want for the next 3 weeks. Calories are still being burnt 3 weeks later right? Right.</i><br />
.5 miles in:<br />
<i>So easy. I could do this for another 2 hours no problem.</i><br />
1 mile in:<br />
<i>I hate running. I'm pretty sure those girls next to me are Olympians and that's why they're so much faster than me. It's probably their pants. I need new running pants. I bet if I had teal running pants I could be that fast.</i><br />
<i>Why is everyone passing me?!</i><br />
3 miles in:<br />
<i>Alright. Just ten more to go.</i><br />
<i>Dang it. I should not have put "Don't Stop Believing" on my playlist. Now I'm tearing up while I'm running like a crazy person. It doesn't help that I'm wearing my dads sweatshirt that makes me look like a homeless person. I literally look like a homeless person whose crying while running a half marathon. </i><br />
<i>Hold onto that feelingggggg.</i><br />
4.5 miles in:<br />
<i>Crap the photographer. Smile? Don't smile? I know! Look away and hide behind the the lady you've been attempting to pace with this whole time. Great now slow down to a normal person speed. That lady is totally part robot or something. No human can maintain that pace.</i><br />
6 miles in:<br />
<i>Runner's high! This is easy and I'm basically halfway done! Running is so amazing and easy and I just love running so much! I'm so fast and so athletic and my hair is just tossing back and forth in the wind like a model for thigh implants!</i><br />
6.2 miles in:<br />
<i>And the high is gone. I hate this.</i><br />
<i>Where's Big S? He said he'd be here. He's probably at Starbucks. I want Starbucks. When I finish this I'm getting Starbucks. And Chipotle. And probably some Sweet Frog. Ooh, Noodles and co. Sushi.... Mmm food.</i><br />
7 miles in:<br />
<i>Crap. Another water stop. Running while attempting to drink something is the most ungraceful thing I've ever done, and this is coming from someone who thinks hand circles in the air is still a good dance move. But, man if throwing this cup on the ground isn't the most satisfying thing I've done in years. Littering is so enjoyable!</i><br />
8 miles in:<br />
<i>If you wanna be my lover. You gotta get with my friends. Make it last forever, friendship never ends.</i><br />
<i>Great, now I'm crying at the Spice Girls. This 3 minutes is dedicated to you, Stef, Megan and Erin. You guys would totally not judge me by the 80 year old who just ran past me, right?!</i><br />
9 miles in:<br />
<i>Why is Virginia so hilly?! WHO MADE THESE ROADS?! They should be ashamed of themselves! I can't wait to move to Florida. Florida has no hills. And it has Disney World. And it has considerate road makers (probably Mickey). Unlike VIRGINIA.</i><br />
9.5 miles in:<br />
<i>They will run and not grow weary. They will run and not grow weary. They will run and not grow weary. I thought chanting Bible verses would be like running over a mushroom in Mario Kart and give me an extra speed boost.... I have not found this to be true.</i><br />
10 miles in:<br />
<i>Just cut my legs off and drag me to the finish line. Seriously. Just cut them off. I've already earned more food than I could possible indulge in without my stomach exploding. It's not even worth it.</i><br />
11 miles in:<br />
<i>Wait, what? Just 2 more miles? And I'm at 1:37? I might actually get under 2 hours. I might actually do it! I might actually beat my first half marathon time! .... I also might actually be the worlds most weepy runner. Thank goodness no one pays attention to the homeless runners.</i><br />
12.5 miles in :<br />
<i>Hey there's Big S! And Little S! And Rae! And Gramma bear! They came! I hope they enjoyed that Starbucks. Punks. Whatever. I'm almost done! </i><br />
<i>Then I can cut off my legs!</i><br />
<i>Crap they have cameras too.</i><br />
<i>Smile?</i><br />
<i>Don't smile?</i><br />
<i>Smile and wave?</i><br />
<i>Great, I look crazy.</i><br />
<i>Don't post that on Facebook.</i><br />
<b>13.1 miles.</b><br />
<i>Done. Done. Done. Done. Done. Done.</i><br />
<i>Food. Where's the food.</i><br />
<i>Oh yeah, my metal. Can I eat this? That's the real reason everyone takes pictures of themselves biting their metals, BECAUSE THEY ARE SO HUNGRY.</i><br />
<i>Now I want real food.</i><br />
<i>OOH!</i></div>
<div>
<i>Let's sign up for another half before my brain knows what it's doing!</i><br />
<i><br /></i>
In case you thought I was joking...<br />
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Homeless runner Mel with her styrofoam thigh inserts.</div>
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My children are unimpressed.</div>
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Now that you know how fantastic running is, who wants to do 26.2 with me?!<br />
M<br />
<i><br /></i>
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Melissahttp://www.blogger.com/profile/02292122189017306521noreply@blogger.com0tag:blogger.com,1999:blog-7979887075529673396.post-58555452218954935842014-10-01T16:41:00.001-04:002014-10-01T16:57:50.517-04:00Minnie button and KKISo now that the major causes of stress in my life have been conquered, I can give you all an update. Super huge thanks to everyone who messaged, texted, called me and was asking for updates and who were praying for Rae and I the last few days.<br />
<div>
Here's the full update of what happened yesterday:<br />
<br /></div>
<div>
Rae went to Kennedy Kreiger Institute, a part of John Hopkins.</div>
<div>
We met with both a geneticist and a neurogeneticist (who specializes in mitochondrial disease).</div>
<div>
We went over EVERYTHING in Rae's medical history (if you don't know the whole story you can read some of it <a href="http://2by22.blogspot.com/2014/06/raes-story.html">here.</a> but it hasn't been updated since she started her therapies)</div>
<div>
They asked some questions about our family history, examined Rae (who was super cooperative thanks to Grandpa being there) and then kind of put their heads together and started talking.</div>
<div>
They decided that whatever Rae has going on is genetic (point one for being on the right track).</div>
<div>
They also determined that everything that's going on (weight issues, muscle issues, GI issues, and immune system issues) are all related and not just some freak accident.</div>
<div>
They specifically said they had in mind a few ideas of genetic syndromes that she could have based on her symptoms and her facial features (They were sure to mention how precious she is, but said that a few of her features point to some genetic disorders).</div>
<div>
They mentioned some were progressive, and some were not, meaning there are are some other genetic disorders they're testing for that she could just have the same issues going on for her lifetime, and there were others that, like mito, would get worse over time.</div>
<div>
They would not tell me what disorders they were thinking this could be, for fear I would google them (I would NEVER deliberately google disorders and stress myself out over them...I've never done that...ever).</div>
<div>
But they also said that mitochondrial disease was still on the table and would not ever be able to be ruled out unless they figure out that she has another genetic disorder.</div>
<div>
They said that her gtube was probably one of the best things we could have done for her (Which, can I just say was super validating for me to know that even though it sucked making that HUGE decision to have a gtube placed without an underlying diagnosis or cause of why she needed one, so hearing that it was the absolute right thing to do made me feel SO much better.)</div>
<div>
So what we're going to do now, is have a BUNCH of lab tests run. They'll be testing her immune system, another chromosome test, more mitochondrial disease marker tests, blood counts, and she'll also have a renal (kidney) ultrasound and a dilated eye exam and a hearing test.</div>
<div>
<br /></div>
<div>
So, there's a couple things that would trigger them thinking this is <i>for sure</i> mito after these tests are done. If the renal ultrasound, the eye exam or the hearing test comes back with any issues, or if any of the mito markers (amino acid profile and L/P ratio elevated for a third time), or if she has more regressions or any other new symptoms pop up, then they will be more hard pressed to determining this is a mito disorder. </div>
<div>
If anything from the chromosome test or the immunoglobulin tests comes back then they'll be able to kind of point us in a different direction than mito and towards another genetic disorder.</div>
<div>
If nothing comes back on any of the tests, we have 3 options, one: do nothing and just kind of wait it out and see if she gets worse or has any new symptoms pop up (but continue treating her for the issues she has now), two: treat her like she has mito, start her on a "mito cocktail" of supplements and vitamins that tend to keep people with mito healthier and have more energy, even if she does not have mito, this wouldn't hurt her so there is no harm in trying that, and three: do the exome sequencing to see if they can pick up on other genetic disorders, or a strain of mito that way. This exome test is different than the mtDNA test she had done last week, in that it covers the entirety of the cells DNA and not just the mitochondria, so it would pick up other genetic disorders too.</div>
<div>
<br /></div>
<div>
So we left with no definitive answers.</div>
<div>
But we'll keep pushing.</div>
<div>
We already know if nothing come back, we'll do the exome sequencing.</div>
<div>
For us, it's peace of mind having a diagnosis, even though we know there's nothing we can do about it.</div>
<div>
A diagnosis of <i>any</i> genetic disorder, the treatment is the same: treat the symptoms, which is exactly what we're doing for Rae right now.</div>
<div>
But determining what she has will make a huge difference for us. </div>
<div>
Right now, it's hard to think of having any more kids for fears of passing this on to another child. If we knew the odds by exactly pinpointing what disorder Rae has, that would either confirm our fears or make it easier to think about having another baby at some point.</div>
<div>
Or it would make it easier for my sisters and sister in law to know if this is something they need to watch for in their kids.</div>
<div>
Or if Big S and I need to be tested.</div>
<div>
There's a lot of things to be considered in further testing.</div>
<div>
Sure, we could just settle for the wait and see, but if this DOES end up being a progressive disease or genetic disorder that Rae has, we want to know what our future looks like. No matter how mild or severe the issues are, setting expectations for ourselves and our families is really important, so we're going to get this figured out. Some day, but for now we know this much: it's genetic, and we're doing the best we can to help her at this point, and that's really comforting for the time being.</div>
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Okay, so that was yesterday.</div>
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Today she had her gtube switch.</div>
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She had to go under, which I hate hate hate hate hate. I hate handing her off to someone and walking away.</div>
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Then coming back to her after anesthesia she's usually really cranky.<br />
But she did really, really well today!<br />
AND WE GOT TO GO HOME WITHOUT BEING ADMITTED!!!!<br />
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(Why do I look so angry?!)</div>
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Anyway, she had a PEG tube. </div>
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(Last bolus feed with the PEG tube!)</div>
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(The second picture is from when her tube was first placed)</div>
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Now she has what's called a Mic-key button.</div>
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No that's not the name I made up because I'm a Disney junkie, that's what it's called. </div>
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Though I secretly hope Rae calls it a "Minnie tubie," just because that would be adorable.</div>
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I'm pretty pumped about this new tube. </div>
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(She can do all kinds of things without a tube dragging...like watch Let it Go for the billionth time)</div>
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It's super low profile. </div>
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You can't even tell she has a feeding tube when she has a shirt on and doesn't have to wear her backpack. </div>
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It's going to make a world of difference for her to be able to get around without having to chase her around and worry about her little "tail" hanging out of her shirt.<br />
Or without her tripping on it.<br />
And hopefully, hopefully, hopefully this will decrease her infection risk (She ended up with 2 staph infections in just 2 months after she got the tube placed).<br />
<br />
So that was my week.<br />
Truly, from the bottom of my heart I thank every single person who prayed for Rae and our family this week. You may have read that I kind of <a href="http://2by22.blogspot.com/2014/09/composure.html">lost my mind</a> last week and a lot of you really have been so incredibly supportive this past week (week...month...year...whatever) and it's really been the most amazing thing to see how much people love Rae and our family. Big S, Little S, Rae and I are all incredibly blessed. This week was a huge answer to prayer, knowing we're seeing doctors who really care and feel my frustrations with not knowing EXACTLY what's wrong with Rae, and then having her surgery go so incredibly smoothly was nothing less than God's hand of protection over us. I'm so incredibly grateful!<br />
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M</div>
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Melissahttp://www.blogger.com/profile/02292122189017306521noreply@blogger.com4tag:blogger.com,1999:blog-7979887075529673396.post-45661878103871528682014-09-26T14:10:00.000-04:002014-09-26T14:12:39.230-04:00Composure.<span style="font-family: inherit;">I had a moment today.</span><br />
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<span style="font-family: inherit;">One of those moments where you're vulnerable and ugly cry in front of people you really don't even know (little s' mops teachers to be precise).</span></div>
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<span style="font-family: inherit;">It was a very brief moment, thankfully.</span></div>
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<span style="font-family: inherit;">And I'm hoping no one saw the aftermath of that moment as I drove home from MOPS this afternoon.</span></div>
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<span style="font-family: inherit;">They would have seen my babies giggling in the back (which almost never happens, usually it's screaming) while I'm attempting to discreetly sob I while driving down Old Bridge.</span></div>
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<span style="font-family: inherit;"><br /></span></div>
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<span style="font-family: inherit;">I'm supposed to be composed.</span></div>
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<span style="font-family: inherit;">I feel like, at 23, I have so much more to prove.</span></div>
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<span style="font-family: inherit;">I should be a good mom.</span></div>
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<span style="font-family: inherit;">My kids should be well behaved.</span></div>
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<span style="font-family: inherit;">And I should be strong for my baby girl.</span></div>
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<span style="font-family: inherit;">But today, I was not composed.</span></div>
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<span style="font-family: inherit;">And it wasn't just one thing that put me over the edge.</span></div>
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<span style="font-family: inherit;">Maybe it's Rae's upcoming surgery, or appointment at KKI next week.</span></div>
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<span style="font-family: inherit;">Maybe it was Little S having his first week of preschool and becoming increasingly aware of just how BOY he is.</span></div>
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<span style="font-family: inherit;">Maybe it was obsessing over Little S and his pushing.</span></div>
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<span style="font-family: inherit;">Maybe it was being stressed out over my upcoming half marathon.</span></div>
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<span style="font-family: inherit;">Maybe it was knowing I was going home to sticky floors and more laundry than I can wrap my head around.</span></div>
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<span style="font-family: inherit;">Maybe it was worrying about Big S having a hard week at work.</span></div>
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<span style="font-family: inherit;">I don't know exactly what made me have a moment today.</span></div>
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<span style="font-family: inherit;">But one thing is for sure:</span></div>
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<span style="font-family: inherit;">I am not composed.</span></div>
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<span style="font-family: inherit;">I am a mess.</span></div>
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<span style="font-family: inherit;"><br /></span></div>
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<span style="font-family: inherit;">Our MOPS theme this year is "Be you, bravely."</span></div>
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<span style="font-family: inherit;">I did share with my table some of what we have been through with Rae. I shared part of my "mess" (if I was entirely honest, it would have been a synopsis of my entire life), but I think the bravest thing I could have done was not hold back. I wanted to cry as I talked about the first time she was in the hospital. I wanted to scream how unfair it is that next week I will be filled with fear every single day as she has a meeting with a doctor who could tell us exactly what's going in in her body. And then the next day I'll have to hand her off to a doctor for the fourth time and have zero control while she's under anesthesia. The next day will decide if she needs orthotics to help her balance and walk, another major adjustment for her. I wanted to sob that I KNOW, God's got this. I know that even if we spend the rest of our days not knowing what the root of all of Rae's issues are, that we will keep fighting for her.</span></div>
<div>
<span style="font-family: inherit;">I put on my brave face for her at every appointment. Every needle stick for lab work, every uncomfortable procedure, every new doctor, every nurse visit, every therapy, I keep it together.</span></div>
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<span style="font-family: inherit;">But if I was truly brave, I would have told my ladies I am not composed.</span></div>
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<span style="font-family: inherit;">What's happening in my life right now is HARD.</span></div>
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<span style="font-family: inherit;">It's the hardest thing I've ever done.</span></div>
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<span style="font-family: inherit;">I have no control.</span></div>
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<span style="font-family: inherit;">The only thing that keeps me fighting is knowing that God IS in control. And He cares for our family more than I can wrap my head around.</span></div>
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<span style="font-family: inherit;"><br /></span></div>
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<span style="font-family: inherit;">I know it sounds backwards to shout how terrified I am and claim it as bravery, but for me, this is the bravest it gets.</span></div>
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<span style="font-family: inherit;">I'm a little vulnerable here, as I imagine most parents are when it comes to their kids.</span></div>
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<span style="font-family: inherit;">When you get married and start a family you don't think "oh hey, I can't wait to only see my husband for an hour before the kids go to bed." Or "I can't wait to find out my son is THAT kid in his class" or "I can't wait to spend at least 2 days a week with doctors prodding at my daughter.".</span></div>
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<span style="font-family: inherit;">Being brave is letting down that wall and telling you: I am not composed. I feel like a mess. And the only way I keep my head above water is by opening my Bible.</span></div>
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<span style="font-family: inherit;"><br /></span></div>
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<span style="font-family: inherit;">"Be strong and courageous . Do not be afraid, and do not be dismayed, for The Lord your God is with you." Joshua 1:9</span><br />
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Melissahttp://www.blogger.com/profile/02292122189017306521noreply@blogger.com1tag:blogger.com,1999:blog-7979887075529673396.post-67743288310106961182014-09-15T22:28:00.000-04:002014-09-17T17:22:47.434-04:00Keep My Eyes Above the Waves.It's Mitochondrial Disease awareness week.<br />
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A year ago, I had NO idea what mito was.</div>
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And yet here I am, thrust into taking care of my baby girl who, "meets the criteria" for a mito diagnosis.</div>
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I still don't feel comfortable saying that's her diagnosis, even though all her lab work and symptoms and doctors are saying this is it.<br />
But while that may not be her formal diagnosis yet, we are acutely aware that this disease is, again, more likely than not, what our sweet Rae has.<br />
<br />
I wanted to share a video or something.<br />
I wanted to find a picture or a fact about mito to post to shed some light on the disease.<br />
But the results of my search were exhausting.<br />
Everything I found is cripplingly negative.<br />
Mitochondria are found in every cell, it's what gives your cells 90% of their energy.<br />
When you have a mitochondrial disease, those mitochondria don't function properly and lead to cell dysfunction and cell death leading to system failures.<br />
They post statistics about kids with mito not living past their teenage years.<br />
They post that mito actually kills more children than all childhood cancers combined.<br />
They say that 4,000 children are affected by mito every year.<br />
They shed light on the fact that a simple illness that most kids can fight off can end in the death of a child affected with mito, who is immune compromised due to this disease.<br />
They post testimonies of parents who have lost their children to mito.<br />
They post how these kids are slowly dying because their body is shutting down, system by system.<br />
They say how mito is the invisible disease.<br />
They say how I always feel, like how these kids look normal. They look so normal, but despite what you see, inside their body is a war raging on.<br />
They have good days and bad days where the mitochondria of their cells is slowly making organ systems fail.<br />
They want to inform people how life threatening and horrible mito is.<br />
And it is.<br />
Mito is a horrific disease and I wish I wasn't having to take all this information and pin it to this sweet baby of mine.<br />
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<br />
But as horrific as all the statistics are, Rae doesn't have an expiration date stamped on her.<br />
She is not a statistic and there's no count down on her life.<br />
Mitochondrial disease doesn't define her.<br />
Yes, it's detestable that we have gone through so much heartbreak and frustration and terror after a year of uncertainty and no quick answers.<br />
It's the kind of pain I would never wish on anyone.<br />
It's the heartbreak only a parent could feel when looking at your child and not knowing what the future holds.<br />
It's a future of g tubes, and doctor appointments, and hospitalizations, and surgeries.<br />
We have cried tears of immense pain over unanswered questions and cries of joy when our worries were cast aside by negative results for cerebral palsy, cystic fibrosis, Celiacs, allergies, and countless other things.<br />
We listen to Oceans.<br />
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We open our Bible.<br />
'For I know the plans I have for you', declares the Lord, 'plans to prosper you, and not to harm you, plans to give you a hope and a future.' Jeremiah 29:11<br />
They have no fear or bad news; their hearts are steadfast, trusting in the Lord. Psalm 112:7<br />
We have this hope as an anchor for the soul, firm and secure. Hebrews 6:19<br />
Again, my absolute favorite<br />
<b>God is within her, she will not fall. Psalm 46:5</b><br />
<b><br /></b>
I refuse to take this week to declare the heartbreak and uncertainty that is Mitochondrial Disease.<br />
Instead, I take this week, and every day I am blessed with to give the glory to God.<br />
<br />
I don't know what the future holds for Rae and our family.<br />
I don't know if there's a cure for mito to be found soon.<br />
I don't know if she'll progress or stay with the same symptoms through the years.<br />
I don't know if she'll experience as much pain as we have in the past year.<br />
I don't know if there will ever come a day when I can say, "Rae is cured and 100% healthy!".<br />
I don't know if there will be a week without therapies and appointments and pumped food into my baby's belly.<br />
<br />
There's so much I don't know about our future.<br />
But there's one thing I know for sure, and that is that I believe in a God who is so much bigger than Mitochondrial Disease and any other diagnosis.<br />
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M<br />
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Melissahttp://www.blogger.com/profile/02292122189017306521noreply@blogger.com0tag:blogger.com,1999:blog-7979887075529673396.post-39028703270957029062014-08-29T10:12:00.000-04:002014-08-29T10:12:37.539-04:00Meets the Criteria.This is my very public, secret journal. I write about nothing and I write about everything.<br />
<div>
I know I just wrote about Rae, and this is one of those times when what I write probably seems like nothing to you. But to me, this is major.</div>
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We received a letter from Rae's geneticist on Wednesday. We're sent her synopsis from every appointment a few weeks after. </div>
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Rae's geneticist is not my favorite. When Rae had mito markers picked up on her lab work after her first appointment and I asked about doing more testing to further see if she meets the criteria, she said she "wasn't in a rush to do more testing since mito has no cure so we couldn't do anything anyway". She's also said conflicting things about Rae fitting the "typical" mito diagnosis, saying at one point that we should just wait and "see if she gets any sicker". Then several minutes later said she had seen kids with mito with Rae's exact symptoms... </div>
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Anyway, so super frustrating, and one of the reasons we decided to go to Kennedy Kreiger. But in the end we did retest everything we needed to and she did think that a mito DNA test and looking into mito was a good idea.</div>
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So this letter we got, it's not like there was any shocking information in it. It was sent to me and our pediatrician. It just basically went over what we talked about and the testing we would do and then said </div>
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<i>Due to 2 episodes of regression and failure to gain weight, this patient meets criteria for a mitochondrial disorder. Hence, genetic testing for this condition is warranted. Mitochondrial disorders can benefit from certain medications that can prevent further regression, or fast progression of the disease. There are also medications that need to be avoided when this condition is confirmed by genetic testing.</i></div>
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I don't know why, but that paragraph just feels like a punch in the stomach. We knew Rae was suspected for mito, but seeing it written down under "suspected diagnosis" and knowing that this isn't a "well maybbbbbeeee it's mito" like it was maybeeeee CP, or maybeeee cystic fibrosis, or maybeeeeee Celiacs, or a diary allergy or Hirshprungs, or a bowel obstruction, or IBS, or maybeeeee whatever else they can grasp at. This is now, she meets the criteria, she could be diagnosed even without any of the lab markers she has. This is probably as close to a diagnosis as well get until we get her in to the mito specialist at Kennedy Kreiger. </div>
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But the worst part is, those 2 sentences that say to me, "Hey there are some things we can do to help your daughter. But let's just wait and see for a little while longer". My head has been going a thousand miles a minute thinking of what medications she should be on and what medications she should be avoiding. I've been filled with anxiety about her upcoming gtube switch and the anesthesia they'll use to put her under.</div>
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Plus, I thought about it before, but getting confirmation that this is what Rae has sets in the hugeness of it. This isn't going to go away. Mito has NO CURE. It's not something we just have to get through and one day it will all go away. This is going to be a life long thing for us. This is something Big S and I and Rae and everyone directly connected to her is going to have to be so knowledgable about for the REST OF OUR LIVES. She's not going to get better, and there's a good chance she could get worse. I follow my cousins friends blog (weird connection. I know) whose daughter has mito who messaged me almost a year ago when this all started with Rae and told me how her daughter first showed mito symptoms exactly like Rae. Exactly. Like. Rae. And now she's 6 and has a cannula to help her lungs. I've seen her posts about mito crashes and hospital visits and the never ending doctor visits (we know about that now). But it terrifies me the hugeness of this.</div>
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And I don't feel equipped.</div>
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I've been plugging away a day at a time.</div>
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But now it just feels so incredibly overwhelming.</div>
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<br /></div>
<div>
She's playing in the living room with Little S while I'm in the kitchen typing this. </div>
<div>
She has no idea. </div>
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She doesn't know why she carries a backpack or has a feeding tube. </div>
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She doesn't know any different than having a nurse visit her every week. </div>
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And she won't know that PT and OT aren't for everyone. </div>
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She doesn't know that she has a disease that most people know nothing about. </div>
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She doesn't know that her life will be filled with constant monitoring and clouds of worry covering her.</div>
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<br /></div>
<div>
To be honest, I'm very anxious for the official diagnosis. Or at least a general mito diagnosis. Even once it's determined mito, the next step will be to figure out what strain of mito it is so we know what to expect in the years ahead. But until then it's going to be very hard looking at Rae on her bad days and know there are some medications out there that could help her, but we don't have them. November 25 can't come soon enough.</div>
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Do not be anxious about anything, but instead pray about everything. Philippians 4:6</div>
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I'll try my best to keep this in mind over the next few months,</div>
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Melissahttp://www.blogger.com/profile/02292122189017306521noreply@blogger.com0tag:blogger.com,1999:blog-7979887075529673396.post-77263696798069688282014-08-25T14:33:00.001-04:002014-08-25T14:33:00.810-04:00Rae Update.I haven't posted any Rae updates in a while.<div>Lots has happened in the past month, and a lot is coming up for her.</div><div>This month will actually mark the one year mark since we knew something was off and started testing.</div><div><br></div><div>If you recall, when Rae first had her g tube placed, she somehow got a crazy infection that kept us in the hospital for ten days. Well, a little over 2 weeks ago, the same redness came back. We got her into see her GI and they put her on strong antibiotics and told us to keep an eye on it and if anything changed to take her back to the hospital. We spent that whole weekend with a packed bagged in the car. Fortunately we made it without having to take her in. They did culture it and it came back as another staph infection. I felt super guilty, like it was my fault. I thought that I had not cleaned her site well enough, but her GI said that wasn't the cause at all (and also told me I'm one of the best moms she sees, which totally made my day) and that the infection is her body's way of rejecting the tube and will get better over time.</div><div>So that has mostly cleared up. It's come back a few times, but since she's done with her course of antibiotics now, we will reevaluate at her appointment on Wednesday. If it isn't fully cleared up, she will have to do IV antibiotics. We are hoping if this has to happen, she can have a PICC line placed and we can do them at home so she does not have to be admitted again.</div><div>Once the infection is fully cleared up, she will be able to have her tube changed from a PEG to a button, which is much lower profile and has no excess tubing hanging down when she's not hooked up to the pump.</div><div><br></div><div>Also new, she had an evaluation with a program called Early Intervention. They'll help her with some of her muscle weakness and social issues and work on her speech some, too. She'll have OT twice a month and PT twice a month. So once a week we'll be having her in some sort of therapy. At her evaluation they did tell me they couldn't fix her piegon toe walking and that she needs to go back to her orthopedist. They also referred her to an ENT since she has had over 6 ear infections, so they want to check her hearing.</div><div><br></div><div>We have an appointment with the ortho on Sept 24 and they'll fit her for specialized shoes or braces for her legs that will help with her gait and straighten out her legs. She may also have to see an orthotist, who specializes in feet.</div><div><br></div><div>Our biggest update though is that she did get into seeing a mitochondrial disease and a metabolism specialist at John Hopkins (the Kennedy Krieger Institute) in November (possibly sooner, since I stay at home I can take her if they have a cancellation, which they said is likely). Big S and I recieved a huge blessing that made it possible for us to pay out of pocket for her care at John Hopkins. Our insurance denied paying for her to go before, they wanted us to exhaust all our options in state, but now we are able to take her to some of the best doctors in the country! We had to apply to even see if the doctors thought her case was worth looking into and they did. Which is great, but kind of scary too. It makes it more real that her diagnosis could really be Mito. But any diagnosis would be a relief to start moving forward with her care.</div><div><br></div><div>For those curious, mito does not have a cure. It's a progressive disease that affects all the major muscle systems. Rae is suspected because she has symptoms affecting multiple systems (GI disorder, muscle weakness, poor growth, increased risk of infection, and mild developmental delays) and has had some markers for mito picked up on her lab results. Getting a diagnosis is incredibly hard. We are doing a mito DNA test within the next few weeks, but only 25% of mitochondrial diseases are picked up in this test (if I understand correctly, it's only maternal strains of mitochondrial diseases that are picked up on this test, meaning I would be a carrier or have mito as well if it is picked up on this test). So even if it's negative, she could still have mito. There's also a muscle biopsy they could do, but it's invasive and very painful from what I have read. That will probably be a last resort. I'm hoping if she does truly have mito, the specialists at JH can make a clear diagnosis based on her symptoms and the lab work she has already had done.</div><div>Like I said, mito has no cure. So if this is what she has the course of action will be to consistently monitor her muscle systems to make sure they aren't starting to fail. She'd routinely see a pulmonologist, cardiologist, a mito specialist, her neurologist, her GI, her orthopedist, and continue with the therapies she's already doing. Her g tube would also most likely be a much more long term thing, since nutrition is obviously a key component to keeping her muscle weakness from progressing. Not all mito patients have rapidly progressing muscle issues, which is incredibly reassuring. She could remain stable for years, which gives us a lot of hope!</div><div><br></div><div>The more I think about what a mito diagnosis would mean for our family, while it does scare me, I also have a lot of trust that Gods going to always, always, always keep His arms wrapped tightly around Rae. She has had so many ups and downs this year. She has had so many illness and tests and has been poked and prodded and traumatized. But despite her year, she's thriving and doing really, really well. I praise God for all the tests that came back negative. And I praise Him that I get to be this little girls mama. </div><div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGLKtzv-xBOoCJ2oQrR8Hb0oR9CicAXWlLuwLzdS4NzsUeQ9D2FhzmL6VTZpyZoSgXgwKtqXAZ4prcyka0GcS4LCUobys82DmKmFTnn3uUiIjtpqYRx3xkt7tbxW9voOKmvhDwmM5NXfgD/s640/blogger-image-985791488.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGLKtzv-xBOoCJ2oQrR8Hb0oR9CicAXWlLuwLzdS4NzsUeQ9D2FhzmL6VTZpyZoSgXgwKtqXAZ4prcyka0GcS4LCUobys82DmKmFTnn3uUiIjtpqYRx3xkt7tbxW9voOKmvhDwmM5NXfgD/s640/blogger-image-985791488.jpg"></a></div><br></div><br></div><div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwP53IR7YdOQTLarJVsHCqNOT7e08L6JoScPYuU0RcMnpRyrpGXMEz5raWnDNg_d6EssZEtGRfkA7WmAlsFf1Y4aB7BbhHrGs7RQnPnm0l27qsqoo9DnzvHxIHjmNerllcJnqwW0I2K8VJ/s640/blogger-image-847197023.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwP53IR7YdOQTLarJVsHCqNOT7e08L6JoScPYuU0RcMnpRyrpGXMEz5raWnDNg_d6EssZEtGRfkA7WmAlsFf1Y4aB7BbhHrGs7RQnPnm0l27qsqoo9DnzvHxIHjmNerllcJnqwW0I2K8VJ/s640/blogger-image-847197023.jpg"></a></div></div></div><div>God is within her, she will not fall.</div><div>Psalm 46:5</div><div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">M</div><br></div>Melissahttp://www.blogger.com/profile/02292122189017306521noreply@blogger.com0tag:blogger.com,1999:blog-7979887075529673396.post-18657370752558851232014-08-11T16:41:00.002-04:002014-08-11T16:43:32.860-04:00Three.Everyone has that one friend who talks way too much.<br />
The friend who over shares.<br />
The friend who says something and you think "Why would ANYONE say that out loud??"<br />
The friend who says inappropriate things and you question their social skills.<br />
To a lot of people, I am that friend... But for me, it's Little S.<br />
<br />
Three is such a weird age. They're old enough to talk to you, but I'd venture to say about 80% of the things that come out of their mouth is nonsense. Or just things that should not ever come out of a person's mouth. Ever.<br />
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Like the one time Little S pooped and then proceeded to scream like a banshee and proclaim "MOM COME LOOK. IT'S AMAZING!"<br />
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He says things with such conviction that I sometimes even believe it. He told me it was snowing the other day and he was so convinced that it was indeed snowing, that I had to question my parenting. Like, did I never explain to you what snow is? You know it's white and covers the entire ground? No, that's the sun, Little S.... I thought watching Frozen 4825182 times would have made this pretty clear. Then he also told me that the sky had an accident when it started raining. Weather is not his strong suit.<br />
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In the car, Little S and I were talking and he says<br />
"Oh mommy, Jesus loves you."<br />
I said, oh that's so right babe. Jesus loves you too!<br />
"Mommy, Jesus is going to take me to the farm."<br />
Really? That's....unlikely.<br />
"Mommy, Jesus is going to take me to the zoo."<br />
Okay...<br />
Then he started whispering, in the most hushed, half-question-like way he said,<br />
"Mommy, Jesus is in my shirt.... Jesus is in my bed..... Jesus is in my closet..."<br />
Look, I love me some Jesus, but this sufficiently creeped me out. And that's all I have to say about that.<br />
<br />
Sometimes he says things wrong, like, instead of saying "Oh no! What are we going to do?!" he says "How we gonna do?!" Or, "She has she binky." Which I laugh at every single time. I can't bring myself to correct him on either of those things. I want him to still be using those phrases when he's 20.<br />
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I mean, yes...some things he says he does get from me. Like when he wakes up in the morning and half grunts/ half screams "WHERE'S MY COFFEE? COFFEE!" I do that <i>on occasion.</i> Or like, the other day we were play cooking together and I said something about wanting a chocolate cupcake and not a vanilla one (C'mon, son. That's basic knowledge.) and he says "Ugh. Mommy, don't be so sassy." Excuse me sir, I will sass you all I want. Because I'm the mom. And I can. And it's fun. I totally get why children like it so much.<br />
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Then there's the repetitiveness of three year olds.<br />
"Mommy, I want some peanut butter. Mommy, can I have some peanut butter? Mommy, peanut butter on a blue spoon? Mommy, I just want some peanut butter. Peanut butter on the blue spoon. Mommy. Mommy, peanut butter? Mommy, I just want some. Peanut butter? I'll get the peanut butter. I need the blue spoon. Can I have peanut butter? Mommy? Please. I just want peanut butter."<br />
Oh, I'm sorry son, did you want something? I was too busy trying to shove my head inside this blender. Which would be equivalent to the painfulness of listening to you "request" something.<br />
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Three year olds. You think they have no idea what they are talking about, until they say something like "Raelyn is so beautiful and she's my princess." or "I just, I just, I just love my dad and want to play for hours and for days" or "Mommy, you're a good mommy!" and suddenly every word that comes out of their mouth has so much more weight to it.<br />
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<br />Melissahttp://www.blogger.com/profile/02292122189017306521noreply@blogger.com1tag:blogger.com,1999:blog-7979887075529673396.post-73167308278067355822014-08-06T16:11:00.001-04:002014-08-09T16:47:50.082-04:00What I Wish You Knew about Rae and Her Tube.6 months ago Rae had her NG tube placed.<br />
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2 months ago she had her gtube placed. It's been an exhausting transition. I don't know if I would even consider myself transitioned fully, its a constant learning curve.<br />
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It's been months of negativity and awkwardness, mixed with moments of sheer joy.<br />
There have been times I've cried myself to sleep, and nights where we don't sleep at all.<br />
We've had stages of frustration and points where Rae was unstoppable.<br />
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Rae looks healthy. And for the most part, she is just a normal little girl. She jumps. She fills the room with laughter. She fights (Oh, she fights). She's feisty. But her tube makes things complicated in almost every aspect of our lives.<br />
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Getting out the door takes 3 times as long. Get all her medical supplies. Set up the bag. Prime the pump. Hook her up. Get her in the car. Situate the backpack and tube so she can't unplug herself. She unplugged herself. Pull over. Fix the tube. Ask Little S if she's chewing on the tube. She is. Pull over. Unplug her. Get to destination. Re-situate the backpack. Every. Single. Day.<br />
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People can be cruel. When she had the NG tube, it was very obvious she had a medical need. I thought it would go away with the Gtube, but then we had to do continuous day feeds. So now she's required to carry around her backpack half the day (Yay! We're down to only 17 hours a day). You'd think children would be the ones making weird comments about her backpack or tubing hanging down her shirt. But really, you tell them once it helps her eat and they accept it. But adults can be just mean. Maybe I'm overly sensitive, but a side eye or someone staring at the tubing that isn't 100% hidden can make my heart ache. Then there are people who ask questions with such disgust. A lady and I had a little chat last month while in the waiting room to get lab work done had this to say:<br />
"Why are you making her carry that huge backpack?"<br />
"Well, actually it's for her feeding tube pump, which is less than a pound. She usually doesn't mind having the backpack on, and if she does, I take it off and give her a break."<br />
"Why does she need a feeding tube?"<br />
"She's having issues maintaining and gaining weight on her own, despite having adequate nutritional intake."<br />
"So what's wrong? What does she have?"<br />
"We're not entirely sure. They suspect it's a metabolism disorder."<br />
Then this woman actually started grumbling at me while rolling her eyes. Like I had done something horrible to her and Rae. I later heard her whispering to her husband when he returned from checking in as she glared at me and Rae.<br />
Listen people. No doctor is going to perform a surgery and place a feeding tube in a one year old unless it is absolutely medically necessary. Please, please, please don't question a mother who is already feeling like a failure.<br />
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Medical supplies are everywhere. In any given nook and cranny at my house I can find you a bolus syringe, a 5 ml syringe, 3 rolls of medical tape, tendergrips, gtube pads, a feeding bag, a few backpacks adapted with holes in them to make for easier access. You'll be welcomed into our home to the sound of a feeding tube beeping due to air getting processed into the pump. And the sweet aroma of Elecare junior will be burned into your nostrils. Rae's room is surrounded with wires and chargers and pumps. There's an enormous stack of crib sheets for the inevitable change of sheets that has to be done at least 4 times a week. The walls are lined with boxes filled with feeding bags and pump manuals. And her shelves are filled with dressings to cover her tube and medical tapes that cost more than a car payment.<br />
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I am emotionally drained. As I'm reminded from time to time, Rae is undiagnosed. She is doing really, really well right now. But it's hard to feel like we're just treating symptoms and not figuring out the underlying problem at hand. She can do PT and OT and take medications to help with her GI issues. She can have constant gtube feedings and do pretty well getting some weight on her. But it's frustrating (to say the least) to not know why she can't sustain herself on her own. It's frustrating to not know why all she has so many illness. And why can't they see anything on her scopes, though we know her GI tract is not metabolizing food correctly. And why does she have low muscle tone? Yes, these are all things we can work on and "solve", but not knowing the underlying cause for the issues makes me worry about what the future holds.<br />
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I feel like I have to hide her sometimes. I posted a picture of her last week with her stomach out and I felt really weird about it. I felt like I was going to make people uncomfortable. I try to plan accordingly and not make her wear her backpack when we're out. I shift her shirts constantly trying to hide the tubing and keep it tucked into her shorts so no one can see it. I'm not ashamed of it, but I'm so intensely aware that it tends to make people uncomfortable, that I feel like I have to go out of my way to make sure it's concealed to keep her safe. I want to make her feel normal, and no one feels normal when they're being stared at constantly. I know the tube is unusual. You don't see it everyday where a kid has a small hole and tubing coming out of their side. It overwhelms Big S and I too. But I know she's a gorgeous girl and a little tubing shouldn't distract from that.<br />
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Play dates actually kind of suck. Since she's been in the hospital, Rae has been much more clingy. She get's overwhelmed easily. And she doesn't like other people as much. She cries if I put her down near other kids and try to walk away. But what causes an even bigger hindrance on our play dates is her tendency to unplug herself whenever we go out. It seems like the moment she warms up to a start playing on her own is when she finds it a perfect opportunity to unplug herself and I find a small path of formula following her wherever she goes. Friends, I'm sorry. I know its disgusting. It smells like rotten baby food that has been sitting in the sun for days. It's horrendous. I get really embarrassed feel like we should just not go to play dates anymore. Or like I should just stick it out and skip the feed and do nap and evening feeds. But this isn't always possible. I'm sorry your kitchen now smells like my entire house.<br />
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Tube feeding terminology is used daily. Bolus feeds. Priming the pump. Flushing the tube. Clamping the tube. Cleaning the stoma. Tendergrips. Gtube belts. Gtube pads. Granulation tissue. Cellulitis. Continuous feeds. Port. PEG. Button. It all sounds very scientific, but it's not.<br />
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I hate the tube. It seems to make things just a little more complex. She trips over it. I spend my evenings calculating the ounces she's gotten that day and figure out if she needs extra the next. I wake up in the middle of the night in a mothers-intuition-based panic and find the extension tubing wrapped around her neck. I wake up to an unplugged port and a soaked bed. She hates having her stoma cleaned, but its essential to making sure she doesn't get an infection. I hate feeling like I still have no clue what I'm doing and no one who understands the struggles of tube feeding.<br />
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I love the tube. As complex as it all is, I'm so thankful for medical interventions like her gtube. It keeps her nourished and helps give her muscles the strength they need. It helps her thrive until we do find the cause for her issues. It helps her maintain and gain weight. It gives me peace of mind to know I'm somewhat in control of the nutrition she gets. I love how brave and patient all this has made Rae. Her tube gives me one less thing to worry about with her. I don't have to stress about her losing weight (usually). I know she has everything she needs to thrive. I love the way her face lights up when we put on her favorite backpacks and gtube pads. I love the way Little S is so quick to tell me how "Rae's tubie makes her big and strong." I love that the tube gives her the nutrition to make her happy and energetic and the feisty little girl she is today.<br />
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<br />Melissahttp://www.blogger.com/profile/02292122189017306521noreply@blogger.com3tag:blogger.com,1999:blog-7979887075529673396.post-38597952523427455522014-07-27T14:35:00.000-04:002014-07-27T14:51:26.729-04:00P90X3 Results!When I make a change in my life, I tend to do the most dramatic version of that change.<br />
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I'm not just going to have a baby, I'm going to get engaged, get married, and have a baby in a 6 month time period.</div>
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I'm not going to watch just one episode of Food Network Star, I'm going to watch the entire series in 3 days.</div>
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I'm not going to have just one kid, I'm going to have 2 under two.</div>
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I'm not just going to eat some chocolate, I'm going to eat an entire king size chocolate bar in 42 seconds.</div>
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I'm not just going to workout, I'm going to do P90X3.</div>
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And let me tell you, it was awesome.</div>
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I started back in April. April 26, with a promise from Big S that he was going to do it with me.</div>
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Day 1!</div>
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Literally the next day he gave up (Ahem, sound familiar? Like maybe the exact same thing he did when I did Insanity? It's cool. I'm not bitter.)</div>
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Start picture:</div>
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So P90x3, lets talk about the basics.</div>
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It's a 30 minute workout program, with Tony Horton as the trainer. </div>
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I loved his quirkiness. His workout style is much different from Shaun T and Insanity, it's more entertaining than the motivating "DIG DEEPER" that Shaun T would always scream. But I liked it. By the end I would anticipate all his weird little things he'd say to the cast and that actually motivated me go get farther in the workout.</div>
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The workout has 16 different routines: Total Synergistics, The Challenge, Incinerator, The Warrior, Eccentric Upper, Eccentric Lower, Agility X, Triometrics, Decelerator, CVX, MMX, Accelerator, X Yoga, X3 Pilates, Isometrix, Dynamix.</div>
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The workouts change daily based on the schedule you chose.</div>
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There are 4 different schedules for the workouts, classic, lean, mass and doubles. I did lean. I'm going to do another round starting Monday, starting with classic this time.</div>
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The workouts are set up well, 3-4 minute warm up (included in the 30 minutes) and then 26-27 minutes of intense workout with a little chit chat and explanation of the moves. Some moves, like in MMX, are confusing the first go round, so I paused and had to rewind that first week of a new workout. After the 30 minutes is up, there is a 2-3 minute cool down. So yes, it's TECHNICALLY 33 minutes, and not 30 minutes if you count the cool down.</div>
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It's a 6-7 day a week program, with the 7th day being optional. I never did the Sunday workout. I would usually run 3-4 miles or do squats or arm work or just be lazy. </div>
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You DO need some equipment for P90, you need dumbbells (I have 5s and 8s) or resistance bands (I always used dumbbells) and a chin up bar (I found one on Amazon for $30). There's some way to modify and not need a chin up bar, but I didn't research too much into that.</div>
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There is a meal plan and nutrition guide that came with the DVDs, but I didn't use it, because I like food too much.</div>
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Working out with the babies was, at times, challenging, to say the least. But I'm slowly trying to teach myself to take care of my body in the healthiest way possible. Plus, working out gives me sanity to clean up the mess they produce in my 30 minutes.</div>
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<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dzEdQ3lrg-ZQa2muoCzFGrXwm82EUGj8HcfIjPK8aj0v9eS-Cf97YejE7732oqMPOCHUSm5PNecwF_dZjA' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>
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My goals for p90x3 were mostly to just finish it. (Check!)</div>
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I wanted to tone up. (Check!)</div>
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I wanted to learn to do push ups not on my knees. (Check!)</div>
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I wanted to teach Little S and Rae good habits. ("Mommy, you're so big and strong and healthy!" Check!)</div>
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I wanted to increase my strength and endurance. (Check!)</div>
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I accomplished every single one of those things.</div>
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First off, measurements.</div>
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I shed a total of 12 inches from all over my body.</div>
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5 inches total from my thighs,</div>
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2 from my waist, </div>
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2 from my hips, </div>
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and an inch and a half from each arm (most happy with my arm progress!).</div>
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The workout was broken down into 3 phases. Each phase being 4 weeks long.</div>
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Now, you know how much I love before and afters.</div>
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So here's the before again:</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyx5SeS16-GjfglWovIxugdF2tVkMka4BXOY5H9liQvaRD7QYO6xg_GRWGC2Lg16266UfVcKkNvuW1_u3Q_1lddBF91QZQu6XVhmIyt2NDqM1jAQnNvVNaOZRhfmDLl141eCLrBmmlrjs2/s1600/10299167_10202606403340180_9143365377809658199_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyx5SeS16-GjfglWovIxugdF2tVkMka4BXOY5H9liQvaRD7QYO6xg_GRWGC2Lg16266UfVcKkNvuW1_u3Q_1lddBF91QZQu6XVhmIyt2NDqM1jAQnNvVNaOZRhfmDLl141eCLrBmmlrjs2/s1600/10299167_10202606403340180_9143365377809658199_n.jpg" height="320" width="320" /></a></div>
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Here's after phase one:</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxr9HqxEyh45yU6mXKm8hqECl46qJ86nB-01yoimTUgRUk8E-eW4zKpkZaD8pSpRnxrK_ATGiET6i76HIH44Y_IZ3mCvSwzqlgU7GUm3M4o4UQk8J2AVE7QcJjdH0iVJvMb6f1gjZSUSDI/s1600/10313365_10202788389289715_4293793849765487917_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxr9HqxEyh45yU6mXKm8hqECl46qJ86nB-01yoimTUgRUk8E-eW4zKpkZaD8pSpRnxrK_ATGiET6i76HIH44Y_IZ3mCvSwzqlgU7GUm3M4o4UQk8J2AVE7QcJjdH0iVJvMb6f1gjZSUSDI/s1600/10313365_10202788389289715_4293793849765487917_n.jpg" height="400" width="400" /></a></div>
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After phase two:</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1UMKPZfPM5F0NYcWpaWacozrujPDgzfnfH7lD6U0CUiDhH74l4jqAswsOwoaT4uvXjQpBJ1dI5HbEdWzMGgy_LD3AVf9J03_2WVP5uLLjSs-VHjIOmTI6DJeAxCM32j306aDIQD-xUPJv/s1600/progress.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1UMKPZfPM5F0NYcWpaWacozrujPDgzfnfH7lD6U0CUiDhH74l4jqAswsOwoaT4uvXjQpBJ1dI5HbEdWzMGgy_LD3AVf9J03_2WVP5uLLjSs-VHjIOmTI6DJeAxCM32j306aDIQD-xUPJv/s1600/progress.JPG" height="400" width="300" /></a></div>
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And done!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiK0y6W6q4ouN7rqO-AL37S_jYzu8nWXKi-0yTNya01yy68UhXL-dC7IlxMnPdnriXblVVuYlZ9QhngKmABOlvaYX8J6CxPh5rILib6z-X2GOW4tIpS3O6kiKPxyz3u0ycosfYRHY4q81RO/s1600/p90x3.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiK0y6W6q4ouN7rqO-AL37S_jYzu8nWXKi-0yTNya01yy68UhXL-dC7IlxMnPdnriXblVVuYlZ9QhngKmABOlvaYX8J6CxPh5rILib6z-X2GOW4tIpS3O6kiKPxyz3u0ycosfYRHY4q81RO/s1600/p90x3.JPG" height="400" width="300" /></a></div>
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I lost 13 pounds in the 90 days.</div>
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I definitely increased my fitness level. I can do push ups now. My balance is improved. I can keep under a 9 minute mile pace for 3+ miles (I was at 9.30 before p90x3, so I shaved off 30-45 seconds off each mile). I overall feel better and more confident. </div>
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I changed my eating habits the last month or so, after getting home from the hospital and eating so much garbage from the stress of that.</div>
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Okay, one more time, side by side!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwQzJq-j7dd49o27rS_HGNi4izkNxVSa4HH0l4gSZrkICh01IQd4q1XvMla1ryuA-AkiHaUSGIGADvEMzji95TkIy5-bO1-gUvMIVEC5fKSFUSHIq6dxOeW2yllttiti6XQTlbTHXzGOhD/s1600/before+and+after.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwQzJq-j7dd49o27rS_HGNi4izkNxVSa4HH0l4gSZrkICh01IQd4q1XvMla1ryuA-AkiHaUSGIGADvEMzji95TkIy5-bO1-gUvMIVEC5fKSFUSHIq6dxOeW2yllttiti6XQTlbTHXzGOhD/s1600/before+and+after.JPG" height="400" width="400" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWl9dUb9cXRIteCP3INEEJ6SwHwYEWYilyP_ghoXw_l5Z_NGse66sKRasCcN_10v155nT0-1B8wZEoD79-rUanluWmjIdfOuGg3mt1KQXsw87MEQI4iMkEeocXBbvYg06OdCmNFQURj253/s1600/more.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWl9dUb9cXRIteCP3INEEJ6SwHwYEWYilyP_ghoXw_l5Z_NGse66sKRasCcN_10v155nT0-1B8wZEoD79-rUanluWmjIdfOuGg3mt1KQXsw87MEQI4iMkEeocXBbvYg06OdCmNFQURj253/s1600/more.JPG" height="400" width="400" /></a></div>
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M</div>
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{If you are interested in p90x3, I will be doing it again next week and would love to have some people on the same schedule as me to keep each other motivated!}</div>
Melissahttp://www.blogger.com/profile/02292122189017306521noreply@blogger.com2tag:blogger.com,1999:blog-7979887075529673396.post-19709138258772373792014-07-24T20:20:00.000-04:002014-08-09T16:48:21.828-04:00Guess What? I Can Lie Like A Starfish In My Bed Even Though I'm Married.My eye starts to twitch to accompany the irked feeling that I get every time I see another Huffington post or Buzzfeed article about:<br />
"20 Things EVERY Woman in Her Twenties Should Do",<br />
"Don't Get Married Before Reading These 5 Tips!",<br />
"30 'Scientific' Reasons Your 20's Are All About Doing What You Want", <br />
"Are You REALLY Ready to Be a Mom?",<br />
"20 Reasons Girls in Their Twenties Should be Single".<br />
(For some reason a lot of these lists are in increments of 20.)<br />
<br />
Apparently, I ruined my twenties. I was just a few months in to turning 20 when I had Little S, was married to Big S, and had accomplished literally nothing.<br />
No degree.<br />
No real social life.<br />
No career.<br />
Nothing.<br />
<br />
These lists, which I read to see how "the other side lives", are full of advice and 'must-dos!' for every woman in her twenties and thirties. They include advice like:<br />
"Be spontaneous",<br />
"Learn how to down 5 tequila shots in a row!",<br />
"Binge watch 'Girls' and 'Sex and the City' because you can",<br />
"Sometimes it takes a fling with someone you don't like to figure out what you do like",<br />
"You need to have a nutty story to tell your grandkids",<br />
"When you get into bed, lie right in the middle, starfish style, because one day you'll only have one side",<br />
and my favorite,<br />
"Your 20's are for making the most irresponsible decisions of your life".<br />
<br />
Really?<br />
This is the advice people are giving people who should be adults?<br />
Laying in your bed like a starfish HAS to be done before you get married or else you're doomed?<br />
Well, guess what?<br />
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyzFiwyjPkCp5aRb4M930St9qyVRSEy4WLpGjjrR7zPws1ehA4pFtIKJHR02mwAzZQ2BNb_HBS69sTofqVzqjpLxURTbL4f9mpq-JjjOz4P9P_ipShkhseXDJU3qoUz710aY0emXySQX1E/s1600/starfish.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyzFiwyjPkCp5aRb4M930St9qyVRSEy4WLpGjjrR7zPws1ehA4pFtIKJHR02mwAzZQ2BNb_HBS69sTofqVzqjpLxURTbL4f9mpq-JjjOz4P9P_ipShkhseXDJU3qoUz710aY0emXySQX1E/s1600/starfish.JPG" height="400" width="300" /></a></div>
<br />
Yeah, this happened.<br />
I'm 23.<br />
And I'm married.<br />
And I've never traveled.<br />
And I have children.<br />
And I've never seen "Girls".<br />
And I much prefer a glass of wine to tequila shots.<br />
And I'm living my life exactly how I'm supposed to.<br />
Not to brag, but I got a foot massage after I finished lying in my bed like a starfish, so I'd say married life as a twenty something is pretty awesome.<br />
<br />
All these lists and expectations and things that we think are "normal" for twenty somethings (or anyone for that matter) is absolutely ridiculous. Your actions don't need to be validated by a list that someone made while drunkenly sitting at their keyboard making claims of all the things they do that make them happy.<br />
<br />
You really want a list of how to succeed?<br />
<br />
DO WHAT MAKES YOU A HAPPY, THRIVING ADULT, WHATEVER THAT MAY BE.<br />
STOP READING LISTS.<br />
DON'T LET SOMEONE MAKE YOUR LIFE'S GAME PLAN JUST BECAUSE THEY WROTE IT IN A BLOG POST (<b>Except mine, I'm legit.</b>).<br />
<br />
Seriously, stop it with the lists already.<br />
If you expect to be validated for every life decision with a list of why it's the best choice, you are NEVER going to do anything! I can find hundreds of posts about why you should wait to have kids, get married and settle down. I can find thousands of people who say that waiting until your 30s is the best time to have kids. I can find article after article that claims that your 20s are for "making irresponsible decisions".<br />
And those lists may be 100% true for those people, but <b>you are not them.</b><br />
<b><br /></b>
I've found, the best things in life are the ones that aren't in our plans and our perceived perfection.<br />
They are the things unexpected and things that don't make sense.<br />
It's the messes and the mistakes.<br />
It's the things that make us change and reflect on how far we've come that makes us thrive.<br />
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<br />
Those are things you can't find in a blog post.<br />
Except mine. I'm an expert.<br />
<br />
M<br />
<br />Melissahttp://www.blogger.com/profile/02292122189017306521noreply@blogger.com0tag:blogger.com,1999:blog-7979887075529673396.post-36523941155057225642014-07-10T15:03:00.003-04:002014-07-10T15:09:34.713-04:00Dear M,I've written quite a few blog posts writing "to my children", which is ridiculous. They are 3 and one and can't read. Plus by the time they can read, they will probably be like, "Blog? Whaaaa? That's lame, mom. We only read in emojis and hashtags now. #illiterate #winkyface."<br />
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<br /></div>
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But this post isn't for my children.</div>
<div>
It's for me.</div>
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<br /></div>
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Dear M,</div>
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<br /></div>
<div>
Let me start out, by saying you look fantastic today. Those sweatpants that used to be Big S's that you stole make you look like a homeless Disney star with your hair all glammed up like that. And by glammed, I mean in a dirty pony tail. Don't worry, no one can even notice that you are totally experiencing record breaking sleep deprivation torture that's probably on par with water boarding.<br />
<br />
M, you're still cool. Don't listen to your sister, she still watches the OC, which is like, so 2004. What does she know about cool anyway? You know how to cook mac and cheese while children are screaming at your feet like a boss (Are people still making The Lonely Island references?).<br />
<br />
I know everyone your age is having adventures.<br />
They are traveling.<br />
They are being 23.<br />
And you're a wife.<br />
You're a mom.<br />
You have 2 tiny children depending on you.<br />
You're probably under qualified for this.<br />
<br />
Let me just say, right now, this, this life is hard.<br />
<br />
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<br />
But you're nailing it.<br />
<br />
I could write a thousand posts about all the things I've done wrong. I could list every time I failed my children, my husband and my family. I could dwell on every misspoken word, every harsh reply, and every unfinished project. I can't count the number of times I've questioned my judgement in parenting. I could give you more accounts of my "failed adolescence." I've spent countless nights awake wondering why God gave me this family just for me to screw it up.<br />
<br />
But God doesn't make mistakes.<br />
Ever.<br />
<br />
Yes, I'm a disaster.<br />
I worry too much.<br />
I waste time on petty things.<br />
I feed my kids frozen pancakes (I mean, I microwave them first. I'm not a monster).<br />
I let them watch too much TV.<br />
I forget our laundry in the washer and just re wash and re wash and re wash it for a week straight.<br />
I call Big S and make him pick up Panera when I'm too lazy to cook (read: most days).<br />
I work out only so I can eat king size candy bars daily.<br />
I google too much.<br />
I obsess over Rae's medical stuff.<br />
I am short tempered.<br />
And I am just an absolute mess of a person.<br />
<br />
But every day, without fail...<br />
<br />
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They tell me they love me. </div>
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"Um, excuse me mommy? I have a secret. I love you." from Little S. Everyday.</div>
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Bedtime snuggles she never wants to end from Rae. Everyday.</div>
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Back massages and words of affirmation from Big S. Every. Single. Day.</div>
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It doesn't matter if I spent too much of my day yelling "CHILDREN! JUST 5 MINUTES. 5 Minutes of quiet!" or being short with my husband. It doesn't matter if we ran from doctor to doctor and I barely saw Little S at all. It doesn't matter if I spent my day in a decaffeinated daze, without fail, they love me.</div>
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They love me, because what I'm doing is important and good and exactly what they need from me. </div>
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I teach my children to pray and be thankful each day. </div>
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I tell my husband how incredible he is, and that I'm lucky to have him. </div>
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I tell my babies I love them. </div>
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I know all of Buzz Lightyears catch phrases.</div>
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I shower them with hugs and snuggles until they beg me to stop. </div>
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I can heal a bumped head with a kiss.</div>
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I sympathize with Rae and I do my best to give her all that she needs. </div>
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I chase them. </div>
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I play playdoh with them. </div>
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I make silly faces and make up ridiculous songs. </div>
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I can spit out every word of their favorite books by memory.</div>
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I can do the ABC puzzle in 22 seconds flat.</div>
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I build blanket forts. </div>
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I make a mean PB&J. </div>
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I can stop a meltdown just by singing the chorus of Let it Go.</div>
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I keep my pantry well stocked with chocolate (these are important things). </div>
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And I pray for them daily.</div>
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God entrusted me with my babies and my husband.</div>
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I'm exactly what they need.</div>
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He doesn't make mistakes, despite the increasing numbers I make.</div>
<br />
"And we know that in all things God works for the good of those who love Him, who have been called according to his purpose."<br />
Romans 8:28<br />
<br />
You're doing alright.<br />
You're really nailing this parenting thing.<br />
<br />
<br />
M</div>
Melissahttp://www.blogger.com/profile/02292122189017306521noreply@blogger.com2tag:blogger.com,1999:blog-7979887075529673396.post-31976658444191068852014-07-06T15:09:00.001-04:002014-07-10T15:11:54.496-04:00Tube QuestionsI know Rae's gtube is a curious thing.<br />
I've been googling NG tubes and gtubes since we knew that it was a probability that she needed one back in December.<br />
They're different. It's not the norm, and it's kind of AMAZING.<br />
<br />
Since we made the decision about the gtube, I've answered probably hundreds of questions/comments from different people.<br />
So to answer everyone else's questions, here you go:<br />
<br />
"What's wrong with her?" or "Still no diagnosis?"<br />
Answer, not really. They, meaning her pediatrician and the geneticist and the neurogeneticist (who we've never seen yet, but is "very interested" in her case.) "suspect" she has a mitochondrial disorder. Her doctors are working to try to figure it out, but right now, no. There's no diagnosis.<br />
<br />
"She looks surprisingly healthy!"<br />
Yes, she does. Thanks to the tube. When I think back to December and January and remember Rae, and all the struggles she had with her muscle tone and when they thought she had CP, I remember her very differently than she is now. She got sick even more than she does now. Thankfully, she's made a lot of really, really great progress since she had the feeding tube placed. We have seen the regression and weight loss when she is off the tube, so we are confident that at least for right now, the tube is necessary for her growth and nutrition.<br />
<br />
"So she just doesn't like to eat?"<br />
No. Eating is not her problem. She eats really, really well for the most part. On the tube, off the tube, it doesn't matter, she eats really well. She eats a pretty good variety of foods and her calorie intake without the tube is absolutely appropriate for her age and she's seen a nutritionist to ensure us that we have given her all the adequate nutrition she needs by mouth. The problem is, Rae's metabolism is not doing her any favors or helping her gain weight. Her constipation and lack of weight gain indicates there is a problem somewhere that gets better when she has the extra nutrition via the feeding tube, which is why she has it.<br />
<br />
"When will she get off the tube?"<br />
The earliest we will even try to decrease the feeds is 6 months. Theoretically, in 6 months we could try to wean her, it may go well, and then once she's weaned, she has to successfully maintain and gain weight without ANY use of the tube for her medications or any supplemental feeds via the tube for at least 6 months before they will remove the tube. So short answer, a year at the very earliest, but most likely longer. The last time we tried to wean she lost weight and had muscle weakness and balance issues that made us put her back on the NG tube within 6 days of being off the tube. I will not be pushing to wean after 6 months, it's more stress than it's worth to put that kind of pressure on Rae when we don't even know what's wrong. My focus is not on weaning her when we don't have an answer for why having all the extra nutrition is key for her development and growth right now, I'm afraid it will cause more harm than good.<br />
<br />
"How does it all work?"<br />
Okay, this part is confusing.<br />
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The actual tube that goes in her stomach is right underneath her ribcage, not as low as you would think. There is a bumper on the inside lining of her stomach holding it in place and making sure it doesn't come out. She has a PEG tube, so the tube itself is about a foot long, she will possibly switch to a Mic-key button in August (much lower profile than the PEG tube, looks like a small button right up against the skin, no excess tubing.). Right next to the tape, is the clamp. It puts a kink in the tubing so that if I have to unhook her from the tube to give her medicine, or to flush the tube, or to just take her off the pump for any reason, it's there to make sure nothing comes out of the tube while the adapter is open.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsfGRP0LJp4gAs9vlcBurLzHZVqHEiGTe2EXeT30O9KM9i-IcUbpQOxEuDldycEe8KcO3Dqc8mkWF2lQDoA8E9MwfYy6RSYsNq5nYr6wO6BOzVUP_URY2GMSq5AhJqtbq3ag12gBbByJyp/s1600/adapter.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsfGRP0LJp4gAs9vlcBurLzHZVqHEiGTe2EXeT30O9KM9i-IcUbpQOxEuDldycEe8KcO3Dqc8mkWF2lQDoA8E9MwfYy6RSYsNq5nYr6wO6BOzVUP_URY2GMSq5AhJqtbq3ag12gBbByJyp/s1600/adapter.jpg" height="400" width="266" /></a></div>
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The adapter is the actual part that plugs her into the tubing that goes through the pump. The bigger side that is on the top in this picture is used for medicine, the smaller opening is for when she gets hooked up.</div>
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She wears her pump, the Infinity, on her back in a small backpack. It weighs less than a pound!</div>
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We have been so blessed to have been gifted a few backpacks that are made for specifically for tube feeding (and thank goodness for multiples, they almost always end up with formula on them by the end of the day). The feeding bag is hooked around the top of the backpack, ensuring no air goes into the tubing. The pump sits at the bottom and regulates the speed of the flow of formula into the tube. There is a small hole of the side of the backpacks that the tubing goes up and out of to hook onto the adapter.</div>
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"Can she be around other kids?"</div>
Yes! Oh my gosh, yes. She's not in quarantine. I avoid anyone who has had sick kids lately, just because, yes, she has a very crappy immune system and picks up everything under the sun (Just saw our GI last week, less than a week out of the hospital and off all antibiotics from her staph infection and she asked "Does she have ANOTHER cold?" Yes. Always. It's always something with her). But yes, we can still go out and play and go in the pool and she can climb and jump and be a normal little girl!<br />
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"So...she eats all day through the tube...?"</div>
Right now, yes. She's on continuous feeds, pretty much 24 hours a day, with small breaks here and there for bath time, or in the mornings when we switch to her smaller pump. She's at a rate of about 31 ml an hour for a total of about 740 ml a day. Once her weight gets higher, we will increase the rate and do fewer hours. Starting at 35 ml an hour for 20 hours for several weeks, then 40 for 16 hours for a few weeks etc, until we get back to her normal rate of 55 ml an hour for 10 hours, so long as there are no more leaking issues or weight loss. Right now, I'm okay with continuous since it is not affecting her eating by mouth and the backpack is definitely not slowing her down.<br />
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"How do you DO IT?"</div>
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I have no idea.</div>
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We're still figuring little things out. </div>
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Like what's the best and easiest type of clothes for her to wear? </div>
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And what's the perfect amount of formula to put in during the day so none is wasted? </div>
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And how much at night so we don't wake up to the beeping of her pump? </div>
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What's the best position of the tubing in her backpacks? Over the shoulder or around the waist?</div>
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Will she ever stop tripping over the tubing?</div>
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How do we get her to stop "unplugging" herself and leaking formula all over?! </div>
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What's the best way to maneuver her in her car seat and keep her from lying on the hard tubing? </div>
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Who else needs to be 100% in tune with how all this works in case of an emergency and I can't be there? How do I teach them all this, without overwhelming them or driving myself insane with worry?</div>
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When will Big S and I feel comfortable enough to leave her alone in Sunday School or with grandparents even?</div>
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And when will things ever feel "normal"??</div>
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But these questions are why I'm so open about the tube. There's a lot of confusion about what the feeding tube means for her and what her life is like. But I can assure you, she's a normal 16 month old little girl. Yes, she has some needs for extra nutrition, but it's nothing that's going to stop her or slow her down.</div>
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M<br />
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If you have any other questions, submit them on the right and I'll add them to my next post.</div>
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<br />Melissahttp://www.blogger.com/profile/02292122189017306521noreply@blogger.com0