tag:blogger.com,1999:blog-86583346046996172742024-03-13T03:03:21.763-07:00Trach TiesRian Krommenhoekhttp://www.blogger.com/profile/13107418785158412857noreply@blogger.comBlogger56125tag:blogger.com,1999:blog-8658334604699617274.post-72314400187828646522015-08-27T14:38:00.001-07:002015-08-27T14:38:36.759-07:00Starting kindergartenDear World,<br />
<br />
Please be careful with her. Maaike starts kindergaten on Monday and I am terrified. She is so excited! I love that she is so excited and so ready but Im not sure the rest of the world is. As I'm preparing her for school we are doing all of the usual thing: buying a new backpack, crayons, markers, and good old Elmer's glue, but we are also talking. We are talking a lot. Talking about how to respond when someone asks her about her lip or tongue or why her cheek is so big or what the scar on her neck is from. Are you talking too? Are you telling your kids to be kind? Telling them to be brave and sit by the kid who is a little bit different? Are you reminding them about the whole book and cover thing? Please be careful with her. She is brave and she is strong and I know she will do great, but this mommy heart is a little tender, maybe too tender. I've sat by her bedside time and time again waiting for her to wake up from a surgery. I spend hours every week fighting the giants of insurance making sure she can get the best medical care. I hold her in the middle of the night through night terrors. I have slept on her floor watching her oxygen levels rise and fall. And now she will be beyond my sight and in your care. I know she will do amazing things no matter what you do, but please, for my sake, sit by her on the bus, invite her to eat lunch at your table, share your crayons with her, and see her for all she truly is. She is spunky. She is a bit of a smart aleck. She is loyal. She is funny. She is my Maaike.<br />
<br />
Sincerely,<br />
<br />
Rian<br />
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<br />Rian Krommenhoekhttp://www.blogger.com/profile/13107418785158412857noreply@blogger.com5tag:blogger.com,1999:blog-8658334604699617274.post-15824600441496280872013-02-25T19:05:00.001-08:002013-02-25T19:05:37.310-08:00NightmaresWe have been racking up on sleepless nights. The diagnosis is a simple runny nose. The symptoms are continuous coughing, gagging on post nasal drip, and the vomiting. We are burning through sheets, pjs, and carpet cleaner, but this is nothing new. This is every runny nose and something that is par for course around here. <br />
<br />
I am a light sleeper, I hear everything. A blessing and a curse. I am usually awaken by coughing. I lay there listening, try to gage how bad it is and where it's going. Then the alarm sounds. Wrapped around Maaike's big toe is a laser sensor, glowing red, sending second by second oxygen levels and heart rates. If the numbers are below satisfactory the alarm starts to sound. Still I lay in bed. I'm waiting to see if the alarm stops, maybe caused by a long breath or a kick of the foot. I wait for two sounds of the alarm, if it goes to a third I'm up at her bed side. But last night there was no cough or alarm that woke me at this moment. This time she was calling for me, yelling for mommy.<br />
<br />
When I got to her crib she was visibly unset. I started to brush back her crazy locks with my hand and asked her what was the matter.<br />
<br />
"Bad dream. I had a bad dream."<br />
"Oh no." I said, "What happened?"<br />
"My friends were making fun of me."<br />
My heart sank.<br />
<br />
I continued to smooth back her hair until she was back to sleep. I climbed back into my bed too, but I couldn't fall back to sleep for she had just spoken of one of my worst nightmares. <br />
<br />
Miss Maaike is only two years old, three in May, so I can only imagine she was repeating something she heard one of her siblings say or that she was speaking of being teased in the most general sort of way, but I can't imagine that this is the last time I will hear those words and it will mean the most specific and hurtful sort of way. <br />
<br />
The momma bear in me wants to protect her from every stare or rude comment. I want to get vigilantly on any kids on the play ground who point or tease. But I know, "sigh", I know I can't. <br />
<br />
I cannot be the sword of revenge. I must be the voice of confidence. I cannot be the wrath of undeserved pains. I must be the love of healing. I cannot be there for every unkind thing done. But I will strive to prepare her to know of her beauty, to be radiant, to be strong. <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhli9QzGDI7NJVyTzScOYogKXEzGKaBb-nzkQgSNOdG28o_KbbVfKcMVZziUPXSC8c3lxCHHows24MtueFOhjJss7vMGwr2rqzA6WwVkd4_H_FaAnP42OXc66YsQzyaytdWOkf4krN41qdy/s640/blogger-image-1734545893.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhli9QzGDI7NJVyTzScOYogKXEzGKaBb-nzkQgSNOdG28o_KbbVfKcMVZziUPXSC8c3lxCHHows24MtueFOhjJss7vMGwr2rqzA6WwVkd4_H_FaAnP42OXc66YsQzyaytdWOkf4krN41qdy/s640/blogger-image-1734545893.jpg" /></a></div>Rian Krommenhoekhttp://www.blogger.com/profile/13107418785158412857noreply@blogger.com9tag:blogger.com,1999:blog-8658334604699617274.post-60273084790543046182013-02-05T13:19:00.002-08:002013-02-05T13:24:10.712-08:00The Devil You Know and Pre-preparing for decannulation<div class="separator" style="clear: both; text-align: left;">
One day at the library we happened to chance upon this book.</div>
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It is a charming tale, with wonderful illustrations, about a family with a little devil. At first the family is overwhelmed at the disruptions the naughty little devil creates in their lives and can think of nothing worst than life with him. Then one day there is a knock at the door. A tiny and smartly dressed devil is there with the offer of getting rid of their little devil and in turn she will move in and kept house for them. The family resists at first, but then their little devil does something to send them over the edge. Their little naughty devil is banished and the new one moves in taking over the entire house and causing absolute pandemonium. The book is written after and holds true to the old idiom, "Better the devil you know than the devil you don't."</div>
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When Maaike first got her trach, at 1 month old, it was the devil. It changed everything about our lives, where we lived, what we could do, where we could go, our dreams and adventures were turned on their heads, and for awhile I wasn't sure how we would ever recover. But, with time and familiarity her trach became "the devil we knew." It still very much changes our lives, but I'm not afraid of it anymore and in deed I am thankful that a little devilish piece of plastic preserved her life and allowed Maaike to bring us the immeasurable joy she has.</div>
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I have dreamed about the day when Maaike would be decannulated and we could throw her traches in the trash. I have longed for the days when we don't have to divide our family activities, but we can all go together, cold and flu season or not. It seems too good to be true that those days may be coming upon us. And to be honest, I am terrified. Could we be trading the devil we know for something much worse?</div>
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I fear sudden swellings and flareups with no sure airway. I fear surgery and recoveries without easy access. I fear it is too early. I fear emergency phone calls and CPR. I fear the worst. I fear my fears. I fear the unknown.</div>
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<tr><td class="tr-caption" style="text-align: center;">on the way home from her last appointment with a baggy full of fashion coordinating trach caps</td></tr>
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Maaike calls her trach caps "bottle caps". She is adorable. And, she is doing well with them. The process is pretty quick. Start with 2 minutes the first day, then 4 the next, and continue to double each day. In the span of a couple of weeks you come to having the trach capped for eight hours a day. We are almost there. The next step is a capped sleep study at the hospital. This will be very telling to whether she is really ready or not. If the answer is "Yes" then they basically pull out the trach and stick a band aid over it. In 15 minutes it will start to heal itself. Unlike an earring hole, a trach hole or stoma, doesn't patch itself into permanency, it is an open wound held open only by the trach and once the trach is removed it will start to heal itself. Amazing really.</div>
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So here we are, familiar and resolved in a trached life that looks to be turned up on its head again. I suppose we will adapt as we did before and always have. I suppose I most fear a false sense of hope, but whether I am ready or not I have a marvelously spunky two year old who has grown and overcome against so many odds and if she is ready then I will be along for the ride.</div>
Rian Krommenhoekhttp://www.blogger.com/profile/13107418785158412857noreply@blogger.com4tag:blogger.com,1999:blog-8658334604699617274.post-87315598346372905242012-12-23T10:36:00.001-08:002012-12-23T10:36:14.573-08:00Who are you? I think we should meet.<table cellpadding="0" cellspacing="0" style="border-spacing: 0px; border: 0px; color: #222222; font-family: Arial, Helvetica, sans-serif; font-size: 13px; margin: 0px; padding: 0px; text-align: start; vertical-align: baseline;"><tbody style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; padding: 0px; vertical-align: baseline;">
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<tr __gwt_header_row="0" style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"><th __gwt_column="column-gwt-uid-232" __gwt_header="header-gwt-uid-233" class="GLVTYVNK- GLVTYVNI-" colspan="1" style="border-bottom-color: rgb(111, 114, 119); border-bottom-style: solid; border-width: 0px 0px 2px; color: #4b4a4a; font-family: inherit; font-style: inherit; font-weight: inherit; margin: 0px; overflow: hidden; padding: 3px 15px; text-shadow: rgb(221, 221, 255) 1px 1px 0px; vertical-align: baseline;">Entry</th><th __gwt_column="column-gwt-uid-234" __gwt_header="header-gwt-uid-235" class="GLVTYVNK- GLVTYVNC0" colspan="1" style="border-bottom-color: rgb(111, 114, 119); border-bottom-style: solid; border-width: 0px 0px 2px; color: #4b4a4a; font-family: inherit; font-style: inherit; font-weight: inherit; margin: 0px; overflow: hidden; padding: 3px 15px; text-shadow: rgb(221, 221, 255) 1px 1px 0px; vertical-align: baseline;">Pageviews</th></tr>
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<tr __gwt_row="0" __gwt_subrow="0" class="GLVTYVNE-" style="background-color: white; border: 0px; font-family: inherit; font-style: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"><td class="GLVTYVND- GLVTYVNF- GLVTYVNG-" style="border: 2px solid rgb(255, 255, 255); font-family: inherit; font-style: inherit; margin: 0px; overflow: hidden; padding: 2px 15px; vertical-align: baseline;"><div __gwt_cell="cell-gwt-uid-236" style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; outline-style: none; padding: 0px; vertical-align: baseline;" tabindex="0">
<div class="GLVTYVNPN" style="border: 0px; font-family: inherit; font-style: inherit; overflow: hidden; padding: 0px; text-overflow: ellipsis; vertical-align: baseline; white-space: nowrap; width: 220px;">
United States</div>
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187</div>
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<tr __gwt_row="1" __gwt_subrow="0" class="GLVTYVNE0" style="background-color: #f3f7fb; border: 0px; font-family: inherit; font-style: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"><td class="GLVTYVND- GLVTYVNF0 GLVTYVNG-" style="border: 2px solid rgb(243, 247, 251); font-family: inherit; font-style: inherit; margin: 0px; overflow: hidden; padding: 2px 15px; vertical-align: baseline;"><div __gwt_cell="cell-gwt-uid-236" style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; outline-style: none; padding: 0px; vertical-align: baseline;">
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Russia</div>
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27</div>
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<tr __gwt_row="2" __gwt_subrow="0" class="GLVTYVNE-" style="background-color: white; border: 0px; font-family: inherit; font-style: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"><td class="GLVTYVND- GLVTYVNF- GLVTYVNG-" style="border: 2px solid rgb(255, 255, 255); font-family: inherit; font-style: inherit; margin: 0px; overflow: hidden; padding: 2px 15px; vertical-align: baseline;"><div __gwt_cell="cell-gwt-uid-236" style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; outline-style: none; padding: 0px; vertical-align: baseline;">
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United Kingdom</div>
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12</div>
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<tr __gwt_row="3" __gwt_subrow="0" class="GLVTYVNE0" style="background-color: #f3f7fb; border: 0px; font-family: inherit; font-style: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"><td class="GLVTYVND- GLVTYVNF0 GLVTYVNG-" style="border: 2px solid rgb(243, 247, 251); font-family: inherit; font-style: inherit; margin: 0px; overflow: hidden; padding: 2px 15px; vertical-align: baseline;"><div __gwt_cell="cell-gwt-uid-236" style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; outline-style: none; padding: 0px; vertical-align: baseline;">
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Canada</div>
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6</div>
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<tr __gwt_row="4" __gwt_subrow="0" class="GLVTYVNE-" style="background-color: white; border: 0px; font-family: inherit; font-style: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"><td class="GLVTYVND- GLVTYVNF- GLVTYVNG-" style="border: 2px solid rgb(255, 255, 255); font-family: inherit; font-style: inherit; margin: 0px; overflow: hidden; padding: 2px 15px; vertical-align: baseline;"><div __gwt_cell="cell-gwt-uid-236" style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; outline-style: none; padding: 0px; vertical-align: baseline;">
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Australia</div>
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5</div>
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<tr __gwt_row="5" __gwt_subrow="0" class="GLVTYVNE0" style="background-color: #f3f7fb; border: 0px; font-family: inherit; font-style: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"><td class="GLVTYVND- GLVTYVNF0 GLVTYVNG-" style="border: 2px solid rgb(243, 247, 251); font-family: inherit; font-style: inherit; margin: 0px; overflow: hidden; padding: 2px 15px; vertical-align: baseline;"><div __gwt_cell="cell-gwt-uid-236" style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; outline-style: none; padding: 0px; vertical-align: baseline;">
<div class="GLVTYVNPN" style="border: 0px; font-family: inherit; font-style: inherit; overflow: hidden; padding: 0px; text-overflow: ellipsis; vertical-align: baseline; white-space: nowrap; width: 220px;">
Poland</div>
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3</div>
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<tr __gwt_row="6" __gwt_subrow="0" class="GLVTYVNE-" style="background-color: white; border: 0px; font-family: inherit; font-style: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"><td class="GLVTYVND- GLVTYVNF- GLVTYVNG-" style="border: 2px solid rgb(255, 255, 255); font-family: inherit; font-style: inherit; margin: 0px; overflow: hidden; padding: 2px 15px; vertical-align: baseline;"><div __gwt_cell="cell-gwt-uid-236" style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; outline-style: none; padding: 0px; vertical-align: baseline;">
<div class="GLVTYVNPN" style="border: 0px; font-family: inherit; font-style: inherit; overflow: hidden; padding: 0px; text-overflow: ellipsis; vertical-align: baseline; white-space: nowrap; width: 220px;">
United Arab Emirates</div>
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</td><td class="GLVTYVND- GLVTYVNF- GLVTYVNA0" style="border: 2px solid rgb(255, 255, 255); font-family: inherit; font-style: inherit; margin: 0px; overflow: hidden; padding: 2px 15px; vertical-align: baseline;"><div __gwt_cell="cell-gwt-uid-237" style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; outline-style: none; padding: 0px; vertical-align: baseline;">
2</div>
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<tr __gwt_row="7" __gwt_subrow="0" class="GLVTYVNE0" style="background-color: #f3f7fb; border: 0px; font-family: inherit; font-style: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"><td class="GLVTYVND- GLVTYVNF0 GLVTYVNG-" style="border: 2px solid rgb(243, 247, 251); font-family: inherit; font-style: inherit; margin: 0px; overflow: hidden; padding: 2px 15px; vertical-align: baseline;"><div __gwt_cell="cell-gwt-uid-236" style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; outline-style: none; padding: 0px; vertical-align: baseline;">
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Brazil</div>
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</td><td class="GLVTYVND- GLVTYVNF0 GLVTYVNA0" style="border: 2px solid rgb(243, 247, 251); font-family: inherit; font-style: inherit; margin: 0px; overflow: hidden; padding: 2px 15px; vertical-align: baseline;"><div __gwt_cell="cell-gwt-uid-237" style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; outline-style: none; padding: 0px; vertical-align: baseline;">
2</div>
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<tr __gwt_row="8" __gwt_subrow="0" class="GLVTYVNE-" style="background-color: white; border: 0px; font-family: inherit; font-style: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"><td class="GLVTYVND- GLVTYVNF- GLVTYVNG-" style="border: 2px solid rgb(255, 255, 255); font-family: inherit; font-style: inherit; margin: 0px; overflow: hidden; padding: 2px 15px; vertical-align: baseline;"><div __gwt_cell="cell-gwt-uid-236" style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; outline-style: none; padding: 0px; vertical-align: baseline;">
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Ukraine</div>
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</td><td class="GLVTYVND- GLVTYVNF- GLVTYVNA0" style="border: 2px solid rgb(255, 255, 255); font-family: inherit; font-style: inherit; margin: 0px; overflow: hidden; padding: 2px 15px; vertical-align: baseline;"><div __gwt_cell="cell-gwt-uid-237" style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; outline-style: none; padding: 0px; vertical-align: baseline;">
2</div>
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<tr __gwt_row="9" __gwt_subrow="0" class="GLVTYVNE0" style="background-color: #f3f7fb; border: 0px; font-family: inherit; font-style: inherit; margin: 0px; padding: 0px; vertical-align: baseline;"><td class="GLVTYVND- GLVTYVNF0 GLVTYVNG-" style="border: 2px solid rgb(243, 247, 251); font-family: inherit; font-style: inherit; margin: 0px; overflow: hidden; padding: 2px 15px; vertical-align: baseline;"><div __gwt_cell="cell-gwt-uid-236" style="border: 0px; font-family: inherit; font-style: inherit; margin: 0px; outline-style: none; padding: 0px; vertical-align: baseline;">
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Belgium</div>
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1</div>
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Are there a lot of traches in Russia? How did you find your way here? What were you searching for? Did you find it? Do you have a trach? Does your child? With this blog being such a niche blog I am curious about who you are. I have been amazed at how many hits a day I have been averaging. Blow away at my total page views. I would have guessed a hundred a year, not 15,000. I would love to know who you are and just how or why you ended up here, even if it was by mistake. So please take just a moment and leave a comment. I'd love you meet you. I'll start:<br />
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Hi, my name is Rian. I have a daughter with a trach, she has lymphatic and vascular malformations. I started this blog so I wouldn't feel so alone in our journey. I'm thrilled to meet you.Rian Krommenhoekhttp://www.blogger.com/profile/13107418785158412857noreply@blogger.com18tag:blogger.com,1999:blog-8658334604699617274.post-14942653999185794262012-11-29T08:36:00.000-08:002012-11-29T08:36:00.041-08:00The difference a year makes<div class="separator" style="clear: both; text-align: left;">
This photo was taken on Halloween 2011, the cutest Yoda ever. Maaike was one month out from her first sclero therapy treatment (Sept 29, 2011). </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk17O-4fcUF3iAoE1hirKajYNGpkeCQx3epwHv_8V3TxzkELWhKl-_bUErbJ-dh4SpypBy9W9dP-duPvF7ztEg2-KOk5XMnhea7_Y4Pbn6UF1CKu7tiR8L6OFA9w7gxwJH0AiEHYT5I_wW/s1600/1.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk17O-4fcUF3iAoE1hirKajYNGpkeCQx3epwHv_8V3TxzkELWhKl-_bUErbJ-dh4SpypBy9W9dP-duPvF7ztEg2-KOk5XMnhea7_Y4Pbn6UF1CKu7tiR8L6OFA9w7gxwJH0AiEHYT5I_wW/s320/1.JPG" width="320" /></a></div>
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Over then next year we would:<br />
<span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;">Sclero of neck Nov 18, 2011</span><br style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;" /><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;">Sclero of neck and base of the tongue Feb 16, 2012</span><br style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;" /><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;">Dental restoration March 30, 2012</span><br style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;" /><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;">MRI April 4, 2012</span><br style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;" /><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;">Tongue reduction May 14, 2012</span><br style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;" /><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;">Coblation and Yag laser August 13, 2012</span><br />
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Here we are one year later, Halloween 2012.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDHcvxP6oIOf7CM8YCM8aHnIR0pArYFk4M-QlooBWUZuufFgHkmjDTF-rLdbujOOcJWsxTw-oCqrkJfjIVslpchKikd8N8AetVzj278TVH3GIZnb0-vx9CRo4uQY-VZNFeOhll6p0RiSNH/s1600/2.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="305" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDHcvxP6oIOf7CM8YCM8aHnIR0pArYFk4M-QlooBWUZuufFgHkmjDTF-rLdbujOOcJWsxTw-oCqrkJfjIVslpchKikd8N8AetVzj278TVH3GIZnb0-vx9CRo4uQY-VZNFeOhll6p0RiSNH/s320/2.JPG" width="320" /></a></div>
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It is amazing the difference a year can make.</div>
<br />Rian Krommenhoekhttp://www.blogger.com/profile/13107418785158412857noreply@blogger.com0tag:blogger.com,1999:blog-8658334604699617274.post-65188003487177943082012-11-26T08:25:00.004-08:002012-11-26T19:48:59.092-08:00Preparing to hibernate: the beginning of cold and flu season<br />
Dear Friends,<br />
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I have missed you. I'm sorry I've been gone for so long. I promise I haven't been idol. We moved. Again. It was our 4th move in 2 and a half years. I'm staying put now. Forever. If you are new to this blog or have just forgotten while I left you hanging here is the recap:<br />
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March 2010 sell everything, rent out our house, and move to Beijing China<br />
May 2010 have a baby in China and rush back to the States with her to wage war on lymphatic cysts<br />
July 2010 husband and two other kids move back from China with the suitcases of what we have left<br />
August 2010 move into 120 year old farm house as the house we own is still under contract<br />
July 2011 move back into the house we owned only to realize it doesn't fell like our house anymore<br />
July 2012 move up the mountain to the house where I wish to remain until the day I die. Really.<br />
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So much has happened with Maaike as well. She has healed up nicely from her tongue reduction and is making real strides with the Passey-Muir valve. We did a coblation laser treatment to her tongue and lip that caused massive swelling and in the end produced no results. We are gearing up to have her tonsils and adenoids out in December to help open up her air way a little more. And some other stuff that I can't remember.<br />
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But, what I really want to talk to you about is hibernation. I'm worried this year. In years past she was too small to notice that she was always left behind. She never cried when we the rest of us went off to a holiday party, Sunday church meetings, or the grocery store. This year she is painfully aware. Her first questions of the morning are usually: "You not going?" and "I going too?" <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfxcG3NYaGR74R2CnKlCK-eniG0SKyD8yvAmribN_fXKPs9342t0MMo7Hvho2MHy_PPxutB8BCOWKwhowjAdFO8aJExEOWKdjXX872_q8Ujd-cw5Wsj_8omTZzEdNxG1Koj6-nLmxhuDdy/s1600/4.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfxcG3NYaGR74R2CnKlCK-eniG0SKyD8yvAmribN_fXKPs9342t0MMo7Hvho2MHy_PPxutB8BCOWKwhowjAdFO8aJExEOWKdjXX872_q8Ujd-cw5Wsj_8omTZzEdNxG1Koj6-nLmxhuDdy/s320/4.JPG" width="239" /></a></div>
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I'm not sure how to handle it. I have ramped up the crafts and books, but I'm wondering what you do. Any suggestions? I'm thinking about getting a little indoor slide for her for Christmas. I'm wondering about trying to find someone to come and do a gymnastics class at our house. Or dance? Maybe art lessons? Something that is her special thing. I'm wondering if I can find a fun 12 to 16 year old that would want to do it. Brainstorming phase here. Any other ideas?<br />
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It is hard to be so protective when she is doing so well. I want to take her everywhere and let her experience everything. I have to remind myself that this year we don't have the protection of the synergist vaccines (RSV vaccine) and that she still got RSV with the vaccine last year, though thanks to the vaccines it was mild. But, we have to do what we have to do. And more than just enduring it I want us to enjoy it. Time to put on our thinking caps and work together.<br />
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<br />Rian Krommenhoekhttp://www.blogger.com/profile/13107418785158412857noreply@blogger.com4tag:blogger.com,1999:blog-8658334604699617274.post-76807741987575883422012-07-24T21:18:00.001-07:002012-07-24T21:22:12.671-07:00When business cards get personalIndulge me for a moment while I send you on a copy and pasting journey:<br />
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DC Friend: "I had this idea of making some business cards for Maaike. Maybe a couple of different ones. A sweet one that tells a little about Maaike and her story that you can hand to courious strangers. And one that says "F- OFF!" when you've had enough."<br />
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Me: "Fantastic! We'd love them!"<br />
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DC Friend: <span style="font-family: inherit;">"<span style="background-color: white; color: #333333; line-height: 14px; text-align: left;">Hey Sweetie! I'm working on Maaike's business cards, and want to include some information about things she likes. Can you tell me a couple of simple things? Maybe she likes music or warm water - or whatever it is. One of the things I'm thinking of including is that she loves being with her big brother and big sister!!</span><span style="background-color: white; color: #333333; line-height: 14px; text-align: left;"> </span></span><span style="background-color: white; color: #333333; font-family: inherit; line-height: 14px; text-align: left;">Will totally let you see / approve the cards before they get printed so you get final word on everything!"</span><span style="background-color: white; color: #333333; font-family: inherit; line-height: 14px; text-align: left;"> </span><br />
<span style="background-color: white; color: #333333; font-family: inherit; line-height: 14px; text-align: left;"><br /></span><br />
<span style="background-color: white; color: #333333; line-height: 14px; text-align: left;"><span style="font-family: inherit;">Me: "</span></span><span style="font-family: inherit;"><span style="background-color: white; color: #333333; line-height: 14px; text-align: left;"> </span><span style="background-color: white; color: #333333; line-height: 14px; text-align: left;">Let's see... Maaike is such a champ. She totally rolls with whatever we throw at her. She loves doing whatever her big brother or sister is doing. She loves to swing. Her favorite song is "The Wheels on the Bus" that she plays non stop on the I-pad. She loves playing in the bath, but not getting her hair washed. She is really witty and gets a kick out of teasing us. If anyone is coming in the front door she runs and hides, usually under a blanket in middle of the living room so that she will quickly be found. Her favorite food is chocolate milk and since her last surgery, the tongue reduction, she is learning how to kiss with her lips."</span><span style="background-color: white; color: #333333; line-height: 14px; text-align: left;"> </span></span><br />
<span style="font-family: inherit;"><span style="background-color: white; color: #333333; line-height: 14px; text-align: left;"><br /></span></span><br />
<span style="font-family: inherit;"><span style="background-color: white; color: #333333; line-height: 14px; text-align: left;">Can't wait to see what she is coming up with! She is an amazing friend.</span></span><br />
<span style="font-family: inherit;"><span style="background-color: white; color: #333333; line-height: 14px; text-align: left;"><br /></span></span><br />
<span style="font-family: inherit;"><span style="background-color: white; color: #333333; line-height: 14px; text-align: left;">Then tonight I read this:<a href="http://www.thislittlemiggy.com/2012/07/in-hot-seat.html?showComment=1343186804759#c6284720668448968286" target="_blank"> In the Hot Seat</a> at <a href="http://www.thislittlemiggy.com/" target="_blank">This Little Miggy Stayed Home</a></span></span><br />
<span style="font-family: inherit;"><br /></span><br />
<span style="font-family: inherit;">And I commented this: "</span><span style="background-color: white; line-height: 16px; text-align: justify;"><span style="font-family: inherit;">Can totally relate. I want people to feel free to ask questions about our daughter, but sometimes I just want to talk about trashy TV too. We just moved again so the questions are all stirring up again. Last week we were invited to a birthday party as a family, but the birthday boy admitted to our older daughter that he didn't want Maaike to come because he was scared of her. We of course brought her anyway, but its a work in progress. I know one mom in your SNS posted about business cards for SN kids. Ironically a few days earlier and friend of mine in DC offered to make some for me. I'm hoping the cards will be a great way to allow families to discuss differences and how differences are beautiful. So that when we find ourselves in the next playground situation I can pull out a business card, hand it to the kid and say "Go have your mom read and explain this to you. It'll answer your questions and tell you how special our little one is."</span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbgfsCID91G5neBhzs_-hDiVGhreyi8Fs8FBB0NS422Gww3bMg3M9MiHdsbFc2vd8QVgOAjARjy6XCPJKDMYwuSsOZZKFEJA9rpc6nG9cBYRBbcvx6Tc3ilGmfP4UWGWF1zYLZuoV5sSj7/s1600/photo+(2).jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbgfsCID91G5neBhzs_-hDiVGhreyi8Fs8FBB0NS422Gww3bMg3M9MiHdsbFc2vd8QVgOAjARjy6XCPJKDMYwuSsOZZKFEJA9rpc6nG9cBYRBbcvx6Tc3ilGmfP4UWGWF1zYLZuoV5sSj7/s400/photo+(2).jpg" width="237" /></a></div>
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<span style="font-family: inherit;"><br /></span>Rian Krommenhoekhttp://www.blogger.com/profile/13107418785158412857noreply@blogger.com5tag:blogger.com,1999:blog-8658334604699617274.post-777375694386369462012-07-08T13:52:00.000-07:002012-07-24T20:29:11.795-07:00A tale of two tongues: the tongue reduction<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: inherit;">The week leading up to Maaike's tongue reduction was over shadowed with nerves. Every time I looked at her protruding sweetness I felt sad. The surgery was a necessary evil in my eyes. I want her to have everything our other kids have. I don't want her to have to go through more dental surgeries and a possible jaw surgery, so of course we are going to do it, but I am sad to lose a piece of the girl we love so much. I think my husband said it best. "P<span style="background-color: white; line-height: 20px;">art of me selfishly wants her back the way she was, which was perfect to me."</span><span style="background-color: white; line-height: 20px;"> </span></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="background-color: white; line-height: 20px;"><br /></span></span><br />
<span style="font-family: inherit;"><span style="line-height: 20px;">For the first time Maaike went back to surgery on time, even a bit early, but as always everything took longer than expected and our hour and a half wait turned into a nail biting 2 hours and 15 minutes. Now I realize that in the scheme of things a tongue reduction is small potatoes to what some babies are going through, but on this day it felt very big to us. When I finally got called back to see her the adrenalin powered me through the first ten minutes to get her calmed down and laying back in bed... and then I felt the blood drain from my face and I alerted the nurse as I lowered my self in a chair and I temporarily lost my hearing. Thank goodness for apple juice.</span><span style="line-height: 20px;">Here are her before and afters:</span></span><br />
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<span style="color: #0000ee;"><u><br /></u></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijmU50dEo7zYI_AlN_gLbV1umuFLgqE48Cg2ubMSY-B3ZYOFVSHii9wtoaI4dW3zt2HgajZ8fQQNwiKRlTWZkpNm0vFyg4ACjcibashLCB1ieArdJPi3MlpPJJoTSk1nrO6xwTJ0dBbUnD/s1600/side+view.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijmU50dEo7zYI_AlN_gLbV1umuFLgqE48Cg2ubMSY-B3ZYOFVSHii9wtoaI4dW3zt2HgajZ8fQQNwiKRlTWZkpNm0vFyg4ACjcibashLCB1ieArdJPi3MlpPJJoTSk1nrO6xwTJ0dBbUnD/s320/side+view.jpg" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQMBdkn7Jk0Ngle12eVn0YsOYRotHoBWITM8aVMH0E6hAGY2aBYSstV5-qHpL5zNgsheqdWYKoT_trE_MUWYyzu5k3IkIhEJZS7P_GQKlMVlPhEFWz7sdDIW7nl6tgD-qq1VZxOVXMNF95/s1600/front+view.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQMBdkn7Jk0Ngle12eVn0YsOYRotHoBWITM8aVMH0E6hAGY2aBYSstV5-qHpL5zNgsheqdWYKoT_trE_MUWYyzu5k3IkIhEJZS7P_GQKlMVlPhEFWz7sdDIW7nl6tgD-qq1VZxOVXMNF95/s320/front+view.jpg" width="320" /></a></div>
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We stayed in the hospital for 6 days while she readjusted, fought fevers, and vomiting, and we all took a giant sigh of relief to be on the other side. <br />
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<br />Rian Krommenhoekhttp://www.blogger.com/profile/13107418785158412857noreply@blogger.com4tag:blogger.com,1999:blog-8658334604699617274.post-86613785495264397842012-06-26T19:55:00.004-07:002012-06-28T07:24:18.702-07:00Making the decision to snip the tip<br />
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Since the time that Maaike was born it was clear that her tongue was too big. Such a crazy thing. A abnormality that I would have never thought of. What was unclear was what needed to be done about it. Would she grow into it? Would it grow bigger with her? Would it function? Could we chemically shrink it? Would we have to medically remove some of it? I prayed and hoped and wished on stars that we could avoid putting it to the knife, that one day it would magically shrink, but it didn't.<br />
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When Maaike had her dental restoration surgery we discovered her tongue's first ugly secret: the weight of her tongue was causing her roots to dissolve under her bottom teeth. Then, at our last appointment with our ENT the second secret came to light, that her bottom jaw was thinning and protruding to accommodate her tongue. It had to go...at least part of it.<br />
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Is it weird to lament the lost of a tip of a tongue? Am I crazy that I cried just thinking about that ounce of flesh ending up in a garbage can somewhere? Would it be incinerated? End up in the land fill? In the end it didn't matter. It needed to go...for the love we feel for the tip of her tongue is only the tip of the iceberg.<br />
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<a href="https://mail.google.com/mail/ca/?ui=2&ik=7faad104fc&view=att&th=1382bd6cbc88695a&attid=0.1&disp=thd&zw" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="photo.JPG" border="0" height="320" src="https://mail.google.com/mail/ca/?ui=2&ik=7faad104fc&view=att&th=1382bd6cbc88695a&attid=0.1&disp=thd&zw" width="239" /></a></div>Rian Krommenhoekhttp://www.blogger.com/profile/13107418785158412857noreply@blogger.com2tag:blogger.com,1999:blog-8658334604699617274.post-78371806745423986422012-05-03T11:56:00.000-07:002012-05-03T11:56:10.158-07:00She said exactly what I felt.<br />
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<span style="color: #333333; font-family: Georgia, serif; font-size: 13px; line-height: 20px;">taken from the blog </span><span style="color: orange;"><a href="http://alittlegreat.blogspot.com/2010/02/little-inspiration-why-i-love-being-mom.html" target="_blank">A Little Great</a></span></h3>
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<span style="color: #4c4c4c; font-family: Arial, sans-serif; font-size: 13px; line-height: 20px;"><span style="font-weight: normal;">"Five years ago I learned that even though my life had changed, even though taking my third daughter home wasn't what I had planned, even though, while my world had stopped, others lives were still moving along, and that what I had been given was every bit as wonderful as what they had been given. </span>Even though I might mourn the loss of what might have been, I still love what is.<span style="font-weight: normal;">"</span></span></h3>
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<span style="color: #4c4c4c; font-family: Arial, sans-serif; font-size: x-small;"><span style="line-height: 20px;">written by Somer, the trach mom who coached me through the first year of Maaike's life. </span></span></div>Rian Krommenhoekhttp://www.blogger.com/profile/13107418785158412857noreply@blogger.com0tag:blogger.com,1999:blog-8658334604699617274.post-6710697263062540932012-04-27T06:58:00.000-07:002012-04-27T12:47:04.615-07:00Finding Acceptance<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVU4EkVLT6VChrKlJAYZTtB_yieJlxG36LUCJYu6Q8irATZaAuGia97xmBDBTmYp2TblbzrMgWj_T0qc5QtAS3WNOftbddFD7gsMSzwp-pG4lg3Bg_aHCeGdjC4eoODjnJoj9gSIaawvwi/s1600/different.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="222" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVU4EkVLT6VChrKlJAYZTtB_yieJlxG36LUCJYu6Q8irATZaAuGia97xmBDBTmYp2TblbzrMgWj_T0qc5QtAS3WNOftbddFD7gsMSzwp-pG4lg3Bg_aHCeGdjC4eoODjnJoj9gSIaawvwi/s400/different.jpg" width="400" /></a></div>
I was recently invited to a Facebook group for people of my same faith that have special needs children and this morning someone from the group posted this picture. It is wonderful to feel connected through our different challenges. It is hard for me to reflect back on Maaike's first year of life. It was such an isolating time. But just before Maaike's first birthday we stumbled upon<span style="color: orange;"> <a href="http://trachties.blogspot.com/2011/05/i-want-to-be-like-mike.html" target="_blank"><span style="color: orange;">Liam and Kody</span></a> </span>and realized that there was someone else out there like us. Liam's parents then opened us up to the rest of the Lymphatic Malformation community through their <a href="http://www.liamsland.org/" target="_blank"><span style="color: orange;">foundation</span></a> and a few Facebook groups. The feelings of connection, acceptance, and understanding have pushed the dark clouds of that first year far behind us. <br />
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I would however caution you to make sure you find a group that meets your needs. There are tons of groups, blogs, and websites out there. Each group has its own focus and personality and it needs to be a good match to your needs and personality or it could become more of a setback than a help. I hope coming here, to this blog, is a help for you. It is for me.<br />
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Where in cyber space do you find acceptance and peace?<br />
<br />Rian Krommenhoekhttp://www.blogger.com/profile/13107418785158412857noreply@blogger.com6tag:blogger.com,1999:blog-8658334604699617274.post-22442519516625120892012-04-16T20:42:00.000-07:002012-04-16T20:44:57.940-07:00A tooth for a tooth<div class="separator" style="clear: both; text-align: left;">
Maaike's last surgery was for dental restoration. We used to lovingly call her snaggle tooth. Now we call her <a href="http://en.wikipedia.org/wiki/Chiclets" target="_blank"><span style="color: blue;">chiclet</span></a>. Trach kids are notorious for bad teeth, in fact many special needs kids have weak dentin. I'm not sure if it's because the body is fighting so many more life threatening battles or if it simply has no time to send a little calcium to the teeth or if its just a product of an exhausted mother giving in to a bottle of Pediasure at bedtime (just speaking for myself here). But, the American Academy of Pediatric Dentristy does have<span style="color: blue;"> <a href="http://www.aapd.org/publications/brochures/specialcare.asp" target="_blank"><span style="color: blue;">a few things to say about it</span></a>. </span></div>
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Many trach kids have chipped teeth from being intubated so many times before they were trached. We don't have that excuse. Maaike was trached at 1 month, just 2 months before her first tooth arrived (crazy I know. Of all my kids why did her's have to be the one to come in early?). Her dentist suspects that she had some low grade trama to her teeth, aka bumping her teeth while learning to crawl, and then the Pediasure did the rest.</div>
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It is such a catch-22. Maaike stuggles to keep weight on. She burns so many calories just breathing. Then we found this great product, all-be-it crazy expensive, that she will drink and helped her to finally put on some weight, but it is eating her teeth alive. You just can't win some times. Thank goodness for baby crowns.</div>
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Along with a few pieces of Easter candy, Maaike and our other two kids found electric tooth brushes in their baskets this year. They were all thrilled at the thought and sound of them, but have really struggled with the "feel" of them. But, we are not giving up. We are weening Maaike off the Pediasure as we speak and are hopefully ensuring her a future filled with pretty princess crowns and not baby teeth crowns.</div>
<br />Rian Krommenhoekhttp://www.blogger.com/profile/13107418785158412857noreply@blogger.com3tag:blogger.com,1999:blog-8658334604699617274.post-58486458612108522982012-03-24T13:57:00.001-07:002012-04-16T19:39:30.756-07:00Organizing My Medical Task List<div class="separator" style="clear: both; text-align: center;">
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I realize this photo isn't great, but you'll get the idea. In August of last year we finally hit our breaking point and hired a nurse that we paid out of pocket. I don't know why we waited so long. It was worth every penny and sacrifice. We kept her hours to a minimum, for grocery shopping, parent - teacher conference, and the occasional date. Then in December we got the news that Maaike had made it on the Travis C. Waiver, the Holy Grail for Utah's technology dependent children. The programs vary by state (and hopefully country), some being much better than others, but thankfully there is help out there. In Utah there is a 2 year waiting list, in some states the moment you are trached the calvary arrives, in some cases it might be worth it to move. The Travis C. Waiver covers only children who are dependent on machines for survival. It works as a secondary insurance, so we still pay for our regular insurance for Maaike and then the Waiver picks up what's left over. It also pays for 50 hours of nursing! Absolutely amazing! At first I didn't know what to do with all that time, but now I am finding endless uses. I stay at home most of the time the nurse is here, but now I am actually able to get through daily tasks and even adding back in some hobbies without having to compromise Maaike's care (a trach child should always have eyes on them). I've even been able to do a little sewing again. :) </div>
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But with new blessings come new problem solving. Between the nurse, my husband, and I it became a little confusing who was doing what and what had and hadn't been done. Light bulb. Make a medical task list calendar. Problem solved. Its so simple, but so effective. I've hand written what needs to be done each day and then we cross it off as it happens so the next person knows what is left. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNT-MvvUbTWnNS8Z_Al9g_2WEpvEf57OmV8AYhITZs6WdxN1dH82Af9ld-493t40pn4CXjLLK_xy63E5mdTQTC_TJfUmwzeAhSh-ZszTAKwq4p6nlh3eZR5NmZcgFsAQPdd9F5GxcDLyGF/s1600/P1050792.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNT-MvvUbTWnNS8Z_Al9g_2WEpvEf57OmV8AYhITZs6WdxN1dH82Af9ld-493t40pn4CXjLLK_xy63E5mdTQTC_TJfUmwzeAhSh-ZszTAKwq4p6nlh3eZR5NmZcgFsAQPdd9F5GxcDLyGF/s400/P1050792.jpg" width="365" /></a></div>
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I put everything on the list, from trach changes to emptying the diaper pail, from changing out the suction catheter to signing the nurses time sheet. Revolutionary. I need one for each kid. You can also see I've got Maaike's going to bed instructions, suction depth, and important phone numbers on her board. I hangs on the wall by the changing table (aka trach command center). I am patting myself on the back for this one. <a href="http://en.wikipedia.org/wiki/Occam's_razor" target="_blank">Occam's razor</a> wins again!</div>
<br />Rian Krommenhoekhttp://www.blogger.com/profile/13107418785158412857noreply@blogger.com10tag:blogger.com,1999:blog-8658334604699617274.post-73370409385983560492012-03-19T12:53:00.002-07:002012-03-19T12:55:41.138-07:00Organizing Medical Equipment<div class="separator" style="clear: both; text-align: center;">
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On July 2nd we will have our 2 year anniversary since being trached, and by saying "we" I am absolutely implying that it happened to our whole family. It really has changed our lives in so many ways, but I assure you that one of those ways was better. Our lives are indeed more scheduled and at home, but we are happier than we have ever been. I remember the night we got home from the hospital and all of Maaike's gear came in the door and I wondered if we would ever find normal and happy again. I wish that me could see us now, because she would have known that everything was going to be alright.</div>
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That first night home we didn't even have a home. I went to my mother-in-laws and had planned on putting Maaike in a port-a-crib. When the RT showed up will all the machines he looked at me very lovingly and broke it to me that this was not going to work. An army of family was instantly mobilized. One brother-in-law ran to Walmart to buy a crib mattress. Two others went to a storage unit to find their crib and changing table for us to borrow. My mother and father-in-law started clearing space for the crib and gear, while the RT started spewing out pressure gauge numbers and temperatures in Celsius. </div>
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With time and patience we have found our system. Thankfully we are in our own home now and life has settled into our current norm. Here is what works for us:</div>
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<span style="font-size: large;"><b>1. movable machines</b></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSAchX26e7AzF5izm1gfRqf8CpBkOGpg-wjEFnts3dKigPJCwTBTRtdvRlZNyWRQob9r9-W86n78h1sbU0vMO6gDXBtahR-6Ou_ykjkB9Pen5gCJNGv990SSH6lSkNipzR1nFEGYm9HFwl/s1600/P1050795+copy.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSAchX26e7AzF5izm1gfRqf8CpBkOGpg-wjEFnts3dKigPJCwTBTRtdvRlZNyWRQob9r9-W86n78h1sbU0vMO6gDXBtahR-6Ou_ykjkB9Pen5gCJNGv990SSH6lSkNipzR1nFEGYm9HFwl/s400/P1050795+copy.jpg" width="400" /></a></div>
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In the beginning Maaike could only tolerate short breaks away from her machines. In order to help her and myself come out of her room and be more a part of the family we put everything we could on her changing table that we fitted with wheels. Late one night there was a crash as her machines fell through the thin board shelf of her changing table. the next morning we bought plywood and metal L brackets for a new heavy duty shelf. I later covered that shelf with some laminate stick-on tiles for easy wipe up. Here's how we position it all:</div>
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<li>humidifier - positioned closest to the bed so we get the most reach with the blue tubing</li>
<li>air compressor - turned sideways so that Maaike can't pull out the filters as easy</li>
<li>pulse-ox- faces the door so I can see her numbers with only a crack in the door</li>
<li>suction-on the bottom shelf so that any residual fluids can drain down</li>
<li>ambu bag- I always keep it in this same spot for emergencies</li>
<li>oxygen concentrator tubing- the concentrator is the one thing that doesn't fit on the changing table.</li>
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<span style="font-size: large;"><b>2. moving parts</b></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYlIl-h41OPyIYoxf0e3O0r2_VSzVWO8EpVYsbB-s4dMsfEc0I1SLe2YZmEJlZ7mWvdCsTGNyNBdiKIl3ykTp-lIRfz8mtOQhPAH8uBZXjvmX-3SYK8B0z_52PSXGwZFvf8EkHfKA4Vd3u/s1600/P1050782.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYlIl-h41OPyIYoxf0e3O0r2_VSzVWO8EpVYsbB-s4dMsfEc0I1SLe2YZmEJlZ7mWvdCsTGNyNBdiKIl3ykTp-lIRfz8mtOQhPAH8uBZXjvmX-3SYK8B0z_52PSXGwZFvf8EkHfKA4Vd3u/s640/P1050782.jpg" width="480" /></a></div>
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<li>a double hook- first it serves to hang the inhalation fluid bag and it also neatly holds the suction catheter (hanging it higher than the suction machine serves two purposes: 1. it allows for any residual fluids to work their way down 2. it is in a handy spot :)</li>
<li> inhalation fluid- it in needs to hang just higher that the humidifier chamber (mine is about a millimeter higher, but it is sucked dry every time) </li>
<li>suction machine- I have it apart from her other machines because for us it is the only one that moves one a regular basis. I have easy access to it here and don't have to fumble with the other machines.</li>
<li>wheels- these were a life saver in the beginning when Maaike was on the machines all day and we would wheel her out for family time, but they continue to serve us now when we travel. The machine stay on the changing table as we roll them out to the car, drop the whole thing in the back of the minivan, and then roll them right into our room<a href="http://trachties.blogspot.com/2011/03/our-first-weekend-away-with-maaike-and.html" target="_blank"> (photos here)</a>.</li>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbnIfWHVa7geJ0IssiPDjW1kMFM65jwiLQ1pz-m4RFnXnyLo0R2DOC7SpPzAHHWf0inmI4t2_b_ltyE1h2LLPljEglABoYD9SDCOsjoGQaYYBg6JL5PlzJWUckqb183CjC62z9XzJgq5Pe/s1600/P1050784.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbnIfWHVa7geJ0IssiPDjW1kMFM65jwiLQ1pz-m4RFnXnyLo0R2DOC7SpPzAHHWf0inmI4t2_b_ltyE1h2LLPljEglABoYD9SDCOsjoGQaYYBg6JL5PlzJWUckqb183CjC62z9XzJgq5Pe/s400/P1050784.jpg" width="400" /></a></div>
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The poor oxygen concentrater is the only one that gets left out of all the changing table fun. One, its too big. Two, it generates so much heat that the girl's room was becoming a sauna. I've attached the tubing and the plug to the door frame with crescent shaped cable hooks so that they don't interfere with the door. The only down sides are that the noise and vibration of it aren't contained behind a closed door and on occasion the filter on the back goes missing, but on the up side the girls are no longer drenched in sweat so that I have to wash their sheets far less. :)Rian Krommenhoekhttp://www.blogger.com/profile/13107418785158412857noreply@blogger.com11tag:blogger.com,1999:blog-8658334604699617274.post-66493587530638939612012-03-12T21:47:00.000-07:002012-03-24T14:06:27.653-07:00Organizing Medical Supplies<div class="separator" style="clear: both; text-align: center;">
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This post is the first in a three part series on organization. Some of you will instantly know that traches and organization go hand in hand, or at least that is the goal. For those of you who are scratching your heads let me explain that every month I get a delivery of roughly 256 medical thingies. That is counting Q-tips, artificial noses, and saline bullets individually, but there are 15 different types of thingies in there. My system works great for us, it may not for you, but hopefully some idea may be helpful in devising your own strategy. </div>
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My mother-in-law is famous for sharing the adage: "A place for everything and everything in it's place." So here are my places:</div>
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<b><span style="font-size: large;">1. under crib storage</span></b><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEillEAGua2aWEkHULl_YbBAo_ApVOOyyg_hbxnMi0SLtd_7owehs3Ll2e7z4V22XvAncbnOY1xKpWDHrwt2k4Ss1G1qBiUIoh1xQVDmtpXhSFwTEPtqP24sWr67zaKM5HvFG4a3V4juiokv/s1600/P1050779.jpg" imageanchor="1" style="clear: right; display: inline !important; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEillEAGua2aWEkHULl_YbBAo_ApVOOyyg_hbxnMi0SLtd_7owehs3Ll2e7z4V22XvAncbnOY1xKpWDHrwt2k4Ss1G1qBiUIoh1xQVDmtpXhSFwTEPtqP24sWr67zaKM5HvFG4a3V4juiokv/s400/P1050779.jpg" width="400" /></a></div>
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I built this drawer one late night when my husband was out of town and couldn't see the mess. I measured the crib size and then made the drawer 4 inches smaller in both directions. I had the person at Home Depot cut everything for me in the store so I could go home and assemble. Some day I would like to stain it to match the crib, but by the time that happens Maaike will be ready for a bed and then it wont match. So for future matchiness it is all natural wood. Three points of interest:</div>
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<li>low profile- if you make one of these I would recommend keeping the height minimal for that it will be versatile for crib or bed.</li>
<li>long handle- having a long handle really helps in a one-handed pull out. All those supplies get heavy and you don't want to accidentally ram it into your crib legs or the wall. This handle is actually a towel bar from Ikea for $1.99</li>
<li>wheels- for an easy glide in and out, wheels are a must, but don't get swivel ones or the drawer will go all crazy like. I strongly recommend the straight forward and back wheels to ensure a clean roll out every time.</li>
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<span style="font-size: large;"><b>2. storage bins</b></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiitNV7HBtplI2ZrRE84la_qOC6T_JLHDQvvFSk0B0v_qkTjh8NtQwpWM7KWFNmBRVFZsbU42sZplb8oCI9eotByBLAqldEiM6bE9FbIOP_pTHctYfCUY-IEs5VdrKdKUNGdcaqQVpusF9z/s1600/P1050778.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiitNV7HBtplI2ZrRE84la_qOC6T_JLHDQvvFSk0B0v_qkTjh8NtQwpWM7KWFNmBRVFZsbU42sZplb8oCI9eotByBLAqldEiM6bE9FbIOP_pTHctYfCUY-IEs5VdrKdKUNGdcaqQVpusF9z/s400/P1050778.jpg" width="400" /></a></div>
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I always envisioned that I would make some super cute, fun, and colorful canvas totes for my storage bins. I even went as far as to buy some canvas, but the pink throw-up bins from the hospital do work and will probably always work. Here's what's in mine</div>
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<ol>
<li>saline bullets</li>
<li>mouth sponges- my favorites are the <a href="http://www.amazon.com/Toothette%C2%AE-Oral-Care-Alcohol-Free-Mouthwash/dp/B006GQODZK/ref=sr_1_sc_11?ie=UTF8&qid=1331608631&sr=8-11-spell" target="_blank"><span style="color: orange;">green Toothetts</span></a>, but insurance pays for these pink ones</li>
<li>trach ties, pulse ox probes, and trach masks</li>
<li>artificial noses</li>
<li>suction catheters</li>
<li>suction catheters
</li>
<li>inhalation fluid for humidifier</li>
<li>portable oxygen</li>
</ol>
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<span style="font-size: large;"><b>3. the basics close at hand</b></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLCFt2L3AzyiwnesulSRx-edxM0gAVstJTmrQZM8JzMvYhMl1rO2ycqKISznvOUksJIpm0OdLYa-97E9i1NgADvC6bNtB8tX3NJlRpINHldNdfV-zgOQPY-cbi_0rXfd0pEbidtflr7WEw/s1600/P1050787.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLCFt2L3AzyiwnesulSRx-edxM0gAVstJTmrQZM8JzMvYhMl1rO2ycqKISznvOUksJIpm0OdLYa-97E9i1NgADvC6bNtB8tX3NJlRpINHldNdfV-zgOQPY-cbi_0rXfd0pEbidtflr7WEw/s640/P1050787.jpg" width="410" /></a></div>
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I saw a blog post sometime, somewhere, that used an over-the-door clear shoe storage sorter for small toys. I'd like to thank whoever that was for this inspiration. Maaike's changing table is right next to this door so that as I do her trach care, change her diaper, get her dressed, you name it, I've got everything I need within arms reach and ready to go. Here are my everyday go to's:</div>
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<ol>
<li>small lingerie bag for dirty trach ties- I try to use a trach tie 3 times before pitching it and have found that they do much better in the washing machine in a lingerie bag than if I hand wash them. (hang dry)</li>
<li>Passy-Muir valve</li>
<li>spare traches- I keep them in small Tupperware containers (Ikea) to keep them clean and from being damaged</li>
<li>clean trach ties</li>
<li>trach tools- pipes cleaners for cleaning, scissors, red permanent marker (for marking suction depth on the catheter)</li>
<li>sleeping supplies- trach mask, Posey wrap, elastic wrap to secure Posey wrap and pulse-ox probe</li>
<li>sterile Q-tips</li>
<li><a href="http://trachties.blogspot.com/search/label/Snug%20hug" target="_blank"><span style="color: orange;">Snug hug</span></a> and shoulder roll (I use a swimming noodle cut in half)</li>
<li>dental care- pink Toothette sponges, tooth brush, training tooth paste</li>
<li>first aid- pediasure mix (for after throwing up), thermometer, infant Tylenol, moisture barrier for stoma</li>
<li>sterile water and hydrogen peroxide for trach care</li>
<li>hand sanitizer</li>
<li>artificial noses</li>
<li>essential oils- I use Burt's Bees for after her baths, Doterra's Breath blend on the bottom of her feet and Frankincense mixed with pure coconut oil directly over her cysts </li>
<li>saline bullets</li>
<li>sterile water for suctioning</li>
<li>hair stuff</li>
<li>non petroleum diaper ointments (petroleum and oxygen are combustible) </li>
<li>diapers (I can fit 5 per pouch)</li>
<li>shoes!</li>
</ol>
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The next two organization topics will be medical equipment (aka the machines) and medical tasks (the daily trach to-do list). Questions? Comments? Concerns? Talk to me.</div>
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<br />Rian Krommenhoekhttp://www.blogger.com/profile/13107418785158412857noreply@blogger.com27tag:blogger.com,1999:blog-8658334604699617274.post-73742416941111573402012-03-02T09:09:00.000-08:002012-03-12T21:52:01.898-07:00News Interview<div class="separator" style="clear: both; text-align: left;">
One of the things that really surprised me in having a special needs child is the heavy responsibility and even obligation I feel to educate others. I am sure not every special needs parent feels this and I at times have felt resistant to it. When Maaike was still struggling and life was full survival I had another special needs parent encourage me to take my heath care concerns to our state representatives and that maybe I should be the one to "lobby in your state for the rights of these little kids." At the time I felt resentful. I battled within myself that just because Maaike came to our home doesn't mean that I have to be the one to change the world. Then<a href="http://trachties.blogspot.com/2011/05/our-puj-video.html" target="_blank"> <span style="color: orange;">Puj</span> </a>called me. </div>
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Puj was an answer to prayers in so many ways. It was a miracle for bathing and it gave me the perfect platform to share our story and let someone else do all the work. Its a product and a company that I believe in and all I had to do was sit in a chair and talk. I felt stronger after that interview. It was wonderful to be able to literally see how far we had come. It propelled me to start this blog.</div>
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So when a call came from our interventional radiologist asking us to take part in a local interview it felt right. Still my husband and I poured over the decision before agreeing to take part. Amazingly there are children coming forward with lymphatic and vascular malformations who have never received treatments or knew that someone could help them. Sadly some are past the point of response. So once again the opportunity to educate and hopefully help others fell into our laps.</div>
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<img border="0" height="236" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBAiWILgm5abj45Kst6_xIoqK_4RHb0GZ2iP0U-7l8KZrFW_7h3BJMdKj4AqKfWxt2EPe4zAD7uDf_VcFcuMdylth21zdbizEB8ZY33TNpdE30q6xaa73MB1ZF56mW0B06gCJsyyXzlJw2/s320/55529.jpg" width="320" /></div>
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(to watch the interview of us and another LM/VM family <a href="http://www.ksl.com/?nid=148&sid=19245646" target="_blank"><span style="color: orange;">click here</span></a> </div>
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and then select the 10PM Vascular Anomaly Patients)</div>
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What's next? I don't know. I still don't feel strong enough to march on capital hill, but I appreciate the confidence that other mother has in me and hope to be there some day. And when someone throws out hurtful things about exploiting my child I may roll my eyes, but will walk away unscathed knowing that they have no idea what my life is like and that we will continue to do or not do whatever we feel is best for our family and right and good. And so we march on.</div>
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<br /></div>Rian Krommenhoekhttp://www.blogger.com/profile/13107418785158412857noreply@blogger.com7tag:blogger.com,1999:blog-8658334604699617274.post-7582528490161078482012-02-15T15:20:00.000-08:002012-02-15T15:23:26.558-08:00Feeling the loveIn response to our <a href="http://trachties.blogspot.com/2011/05/our-puj-video.html"><span style="color: purple;">Puj video</span></a> I got this email:<br />
<span style="background-color: rgba(255, 255, 255, 0.917969); color: #222222; font-family: arial, sans-serif; font-size: 13px;">"Dear Rian - I stumbled across your </span><span class="il" style="background-attachment: initial; background-clip: initial; background-color: rgba(255, 255, 255, 0.917969); background-image: initial; background-origin: initial; color: #222222; font-family: arial, sans-serif; font-size: 13px;">Puj</span><span style="background-color: rgba(255, 255, 255, 0.917969); color: #222222; font-family: arial, sans-serif; font-size: 13px;"> video from a recommendation about </span><span class="il" style="background-attachment: initial; background-clip: initial; background-color: rgba(255, 255, 255, 0.917969); background-image: initial; background-origin: initial; color: #222222; font-family: arial, sans-serif; font-size: 13px;">Puj</span><span style="background-color: rgba(255, 255, 255, 0.917969); color: #222222; font-family: arial, sans-serif; font-size: 13px;">'s products. We have two little girls, our eldest will be three in October and our youngest is just about to turn 16 months. Your family is so beautiful and your eagerness to expose your children to the new and unfamiliar is just wonderful! I will be thinking of you, your work and love for your children, and of course your youngest girl for a long time to come. At the risk of coming across wrong, but wanting to avoid (to me) the greater risk of not engaging, I had to ask you ... what can we do to help?</span><br />
<span style="background-color: rgba(255, 255, 255, 0.917969); color: #222222; font-family: arial, sans-serif; font-size: 13px;">Yours,</span><br />
<span style="background-color: rgba(255, 255, 255, 0.917969); color: #222222; font-family: arial, sans-serif; font-size: 13px;">Louise"</span><br />
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I happened to get this email after a long day of battling our insurance. I cried reading it. I racked my brain for an answer. What could someone I don't know, who doesn't live near me, do for us? Here is a clip from my response:<br />
"<span style="background-color: rgba(255, 255, 255, 0.917969); color: #222222; font-family: arial, sans-serif; font-size: 13px;"> </span><span style="background-color: rgba(255, 255, 255, 0.917969); color: #222222; font-family: arial, sans-serif; font-size: 13px;">I have thought and thought and wondered and contemplated. In the end it seems to me that the biggest help is what you have already done: reaching out. I have truly felt so loved and cared for by your message. To have someone step through the fear of being misunderstood and extend their friendship is so powerful. Thank you."</span><br />
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<div style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; border-bottom-width: 0px; border-color: initial; border-image: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; margin-bottom: 15px; margin-top: 15px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-align: left; vertical-align: baseline;">
<span style="font-family: Verdana, Geneva, sans-serif;"><span style="font-size: 12px; line-height: 20px;">With time and the help of a few web sites (</span></span><span style="background-attachment: initial; background-clip: initial; background-color: transparent; background-image: initial; background-origin: initial; border-bottom-width: 0px; border-color: initial; border-image: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 20px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><em style="background-attachment: initial; background-clip: initial; background-color: transparent; background-image: initial; background-origin: initial; border-bottom-width: 0px; border-color: initial; border-image: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><a href="http://www.liamsland.org/lm-faq/" style="background-color: transparent; text-align: justify;"><span style="color: purple;">http://www.liamsland.org/lm-faq/</span></a><b><span style="color: purple;"> </span><span style="color: #6a6a6a;">and </span></b></em></span><a href="http://www.kotm.org/" style="background-color: white;"><i><span style="color: purple;">http://www.kotm.org/</span></i></a><span style="background-color: white; color: #333333; font-family: Arial, Helvetica, sans-serif; font-size: x-small;">) </span><span style="background-color: white; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 20px;">I have compiled a list of a few more.</span></div>
<ul style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; border-bottom-width: 0px; border-color: initial; border-image: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: Verdana, Geneva, sans-serif; font-size: 12px; line-height: 20px; margin-bottom: 0px; margin-left: 30px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-align: left; vertical-align: baseline;">
<li style="background-attachment: initial; background-clip: initial; background-color: transparent; background-image: initial; background-origin: initial; border-bottom-width: 0px; border-color: initial; border-image: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><strong style="background-attachment: initial; background-clip: initial; background-color: transparent; background-image: initial; background-origin: initial; border-bottom-width: 0px; border-color: initial; border-image: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-weight: bold; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><em style="background-attachment: initial; background-clip: initial; background-color: transparent; background-image: initial; background-origin: initial; border-bottom-width: 0px; border-color: initial; border-image: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"> </em></strong>Donate money. Find an organization that funds research for a child's particular condition, organizations they are involved in, or what hospital they attend and make a donation on behalf of the child or person you wish to help.</li>
<li style="background-attachment: initial; background-clip: initial; background-color: transparent; background-image: initial; background-origin: initial; border-bottom-width: 0px; border-color: initial; border-image: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><span style="color: #6a6a6a;"> </span>Donate your time. Help with a fundraising event for even do one on your own. Collect inspirational quotes and send a thoughtful email of encouragement. </li>
<li style="background-attachment: initial; background-clip: initial; background-color: transparent; background-image: initial; background-origin: initial; border-bottom-width: 0px; border-color: initial; border-image: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">Donate your faith. A friend recently shared this piece of wisdom with me, "When someone is in the depths of sorrow or stress they cannot be expected to pray. Their plate is too full. We then must be there to pray on their behalf." </li>
<li style="background-attachment: initial; background-clip: initial; background-color: transparent; background-image: initial; background-origin: initial; border-bottom-width: 0px; border-color: initial; border-image: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">Donate someone else. Do you know a boy scout who is looking for an eagle-scout project? A business who needs some tax write offs? A youth group in need of service? Get them involved.</li>
<li style="background-attachment: initial; background-clip: initial; background-color: transparent; background-image: initial; background-origin: initial; border-bottom-width: 0px; border-color: initial; border-image: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">Donate your talents. Do you sew? Help <a href="http://trachties.blogspot.com/2011/03/sewing-for-special-needs-spot-lights.html"><span style="color: purple;">modify clothing</span></a> to a child's special needs or make them a <a href="http://trachties.blogspot.com/2011/04/diy-arm-restraints-snug-hug.html"><span style="color: purple;">Snug Hug</span></a> if needed. Do you like to cook? Make them dinner or prepare snacks for their next hospital visit. Like to read? Do some online research about the child's condition. Loan a book for the parents to read during then next procedure or audio tapes for a long hospital ride.</li>
<li style="background-attachment: initial; background-clip: initial; background-color: transparent; background-image: initial; background-origin: initial; border-bottom-width: 0px; border-color: initial; border-image: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">Donate your thoughts. We have been the grateful recipients of a few care packages. One was full of family games to help get us through the long house-bound winter. One arrived just yesterday. It had puzzles, Valentine candies, and other fun presents. In the end it wasn't even what was inside the package that meant so much, it was knowing that someone was thinking about us. Or, like the woman this post started with, send an email. It doesn't cost anything, but it can make a huge difference.</li>
</ul>
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<span style="font-family: Verdana, Geneva, sans-serif;"><span style="font-size: 12px; line-height: 20px;">In the end I don't think it matters what you do, just that you do. Thank you Lousie and the rest of your kind. My life is bettered because of you.</span></span></div>Rian Krommenhoekhttp://www.blogger.com/profile/13107418785158412857noreply@blogger.com5tag:blogger.com,1999:blog-8658334604699617274.post-74538444601355679842012-01-12T14:46:00.000-08:002012-01-12T14:46:36.369-08:00Keeping Germs at Bay<div class="separator" style="clear: both; text-align: center;">
This is posted on our front door.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2RvojI5BNulQyBhtdiTI_lZ3BhwC8rKVQKV9U9EafyPmXbwRbzPPHjEHERUCEZ1dWYeBB7loX_WufZ1CKbKSV0Izk9wbHAO6J1G1ZS6FWTJ-EmEHP9eff8tYN4whZVIsl48npTDgqqP5i/s1600/front+door+photo.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2RvojI5BNulQyBhtdiTI_lZ3BhwC8rKVQKV9U9EafyPmXbwRbzPPHjEHERUCEZ1dWYeBB7loX_WufZ1CKbKSV0Izk9wbHAO6J1G1ZS6FWTJ-EmEHP9eff8tYN4whZVIsl48npTDgqqP5i/s320/front+door+photo.JPG" width="239" /></a></div>
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It's our nice way to tell our friends and neighbors to stay away. :)</div>
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It is hard and even impossible to keep germs from entering your house. I have received advice from every extreme. From: "You are being way over protective. She needs antibodies. Take her out. Let her get sick." to "You need to have everyone shower right when they get home to wash all the germs out of their hair and then change their clothes." Honestly, the right choice is going to be different for everyone. So far what we are doing is working for Maaike, but that may change. Maaike is doing awesome right now and it is easy to start letting things slip a little, but the facts are that a tracheostomy opens a straight passage to the lungs and things can go from bad to critical very quickly. Here is what we do to try and keep germs at bay:</div>
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<ul>
<li>from October to May Maaike is house bound, she takes rides in the car, but only gets out for therapy and doctor's appointments</li>
<li>the sign on the front door (above) </li>
<li>we wash hands and change our shirts when we get home from work, school, or church</li>
<li>bottles of hand sanitizer at the front and kitchen door </li>
<li>we go directly into a room at the doctor's office, no hanging out in the waiting room</li>
<li><a href="http://en.wikipedia.org/wiki/Palivizumab">Synagis</a> shots every 4 weeks during the cold and flu season (the RSV vaccine. It is very expensive and took several appeal letters for our insurance to accept it, but they finally gave in. :)</li>
<li>I nursed Maaike until she was 14 and a half months to boost her antibodies</li>
<li>keep our fingers crossed, hope, and pray</li>
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Despite all this Maaike did come down with RSV last June. Thankfully, I'm guessing mostly in part to Synagis, it was a fairly mild case and she was not hospitalized. It was however a very long and isolating winter. This year I feel much more prepared to weather the storm. This year we have 50 hours of nursing help per month so that I can go shopping, help at our daughter's school, meet my husband for lunch, or just go for a walk. I can't say enough to the importance of a the care taker getting away for a little R & R. Every parent needs that. It can be really stressful to leave your child with someone, but be diligent to find that right person so that you can browse the produce aisle in total confidence. My husband did phone interviews with 15 nurses. I then did face to face interviews with his top 5. I didn't leave the house the first little while that our nurse worked for us to make sure that we both felt confident. And now I am hoping that she will be available when I need a nurse one day.</div>
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Other tactics for staying sane over the cold and flu season? I overdosed on craft items at Joann's. My husband and I are getting better at stay-at-home dates. I made my husband buy me a treadmill and I actually use it. I eat too much ice cream, hence the need for the treadmill. And lastly, I reach out to my circle of trach moms. They know. They understand. They've been there or are there and survived. Some days hearing that makes all the difference. How about you?</div>Rian Krommenhoekhttp://www.blogger.com/profile/13107418785158412857noreply@blogger.com6tag:blogger.com,1999:blog-8658334604699617274.post-4965228595789235872011-10-10T19:37:00.000-07:002011-12-30T12:14:14.289-08:00Sclero, sclahro. Potato, potahto.<div style="text-align: center;">
* Warning. Photos in this post are not for the faint of heart*</div>
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"You're just going to have to have faith." Uncommon words coming from a doctor, but that was precisely what our pediatric radiologist said to me. We are currently taking a pretty aggressive stance against Maaike's cysts in hopes that we are creating a future for her that is filled with words and food. We decided to move away from the advice of our local doctor and follow the path that the doctors at Children's Hospital in Boston. Thus far Maaike has undergone two rounds of sclerotherapy, with 10 to 15 more treatments to go.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGtrxVnLddxdR1nue8foL_cKKereDoP1t1K9GfOgo0j3Ss4ktLCss2Zsw8Pg7xg9G-43Kxa9rOWBQFjwZnKQ0aqkU3lcG9isJTGQivh_Bms13x2BO-yxcmrSBaTUiYTBVd0XtyrEnwpMFn/s1600/photo.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGtrxVnLddxdR1nue8foL_cKKereDoP1t1K9GfOgo0j3Ss4ktLCss2Zsw8Pg7xg9G-43Kxa9rOWBQFjwZnKQ0aqkU3lcG9isJTGQivh_Bms13x2BO-yxcmrSBaTUiYTBVd0XtyrEnwpMFn/s320/photo.JPG" width="239" /></a></div>
Sclerotherapy involves injecting large or macro cysts with different agents so that they then collapse on themselves leaving a skin tag of sorts. Several different injection agents are used, but one of the more common agents, and the one we are using, is chemo. Because the chemo is injected directly into the cyst and not in her blood stream she will not have the same side effects as a cancer patient, although some sclero patients do experience hair loss in later treatments.<br />
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The actual procedure is done under general anesthesia with the injections guided by ultrasound. First a needle is used to extract fluid from the cyst followed by a second needle that replaces an equal amount of fluid with the chemo drugs.<br />
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The big question: Is it working? The Answer: I don't know.<br />
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Immediately following the procedure there is no visible difference. By the next morning swelling sets in as a natural response to the needles themselves. Next is bruising and hardening of the cysts which can taken weeks or even months to dissipate. And finally the ultimate collapse of the cyst. This far we haven't made it to collapse and so we are striving to keep the "faith" as we push on through more therapies.
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This photo was taken in the ER on day 3 post her first injections. She received 8 injections of <a href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000586/">Bleomycin</a> in her tongue as well as the sclero treatment of 6 surface cysts in her neck. We had been discharged the night before from the hospital and woke up the next morning to this. Over night swelling caused her tongue to split on the right side. We were readmitted to the PICU and then discharged again two days later. <br />
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Here is Maaike another week later. She is such a trooper! No feeding tubes. She went to a Pediasure liquid diet for three weeks until the swelling went down and we slowly introduced soft foods. It took about 6 weeks to get her tongue back to it's normal large size...or maybe slightly smaller.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjj5Y4pnDA6ymiRS-ONQcWaGn-Ibh5SkN1wdjl9_3-OXcViVTUmmC2QThYGRW73Gf5CdSB3kGFTuayAtGo0-Xly61bPgGadBUxQi0fi7HTYnWay_mpVhz_o1a50uEw2xjAG6Ld4mQwtGIeq/s1600/photo+%25282%2529.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjj5Y4pnDA6ymiRS-ONQcWaGn-Ibh5SkN1wdjl9_3-OXcViVTUmmC2QThYGRW73Gf5CdSB3kGFTuayAtGo0-Xly61bPgGadBUxQi0fi7HTYnWay_mpVhz_o1a50uEw2xjAG6Ld4mQwtGIeq/s320/photo+%25282%2529.JPG" width="239" /></a></div>
In consultation with our radiologist we opted not to treat Maaike's tongue in her second round of sclero. I wondered if the pain from her neck injections would be more pronounced without all the tongue trauma, but one dose of Tylenol and a good nap later it was as if nothing had ever happened. We went home that same day. Now the question is if we will treat her tongue again or not.<br />
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So why would we ever put Maaike or ourselves through all this? The answer: Hope. Hope that this will provide her with the best chance at the best life that she could possibly have. Hope for a life full of words and food. Hope for a life without a trach. Hope that one day she will join Trevor Cunningham as one of the kids who made it through the battle with many tales to tell.<br />
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<br />Rian Krommenhoekhttp://www.blogger.com/profile/13107418785158412857noreply@blogger.com9tag:blogger.com,1999:blog-8658334604699617274.post-19584250688892946452011-10-07T11:00:00.001-07:002011-10-07T11:01:33.915-07:00Guest blogging<br />
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Today I am oh so honored to be guest blogging on <a href="http://wearetheraddest.blogspot.com/2011/10/special-needs-spotlight.html"><span class="Apple-style-span" style="color: orange;">This Little Miggy Stayed Home</span></a> speaking about being a special needs mom and life with our dear Miss Maaike. </div>
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Rian Krommenhoekhttp://www.blogger.com/profile/13107418785158412857noreply@blogger.com4tag:blogger.com,1999:blog-8658334604699617274.post-20383126091597512552011-10-05T21:25:00.000-07:002011-10-05T21:26:42.139-07:00To the woman in seat 8C and all "other kids"On our flight to Boston we were seated next to a business woman. She was nice enough to let us move from the aisle to the window, but it came up very early in conversation that she didn't have kids. I took that as the "so please keep your baby in check, I'm not up for it" kind of a statement. She and Sid talked business while Maaike and I snacked and snoozed. After a while she started to soften. She wanted to know about Maaike. What was her story? Why were we taking her to Boston? She even shared two of her in-flight purchased sliders with Sid. She was pleasant, but distant.<br />
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Then, without turbulence or warning, she started sobbing. With only an hour left on our flight she decided to make her move and become unglued. Through her tears she shared about her younger sister, born with down syndrome. Her sister died just 5 years ago. She loved her sister. She learned so much from her. But, "don't get me wrong," it was hard. It was hard to have a sister who needed her parents so much more. It was hard to not some how feel less loved when you require so much less time. It was just hard. <br />
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Next came her plea. "Be careful. Don't forget your other kids."<br />
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She was able to regain composure in the telling of the horse her parents bought her. She knew they loved her. She still rides horses competitively all thanks to her parents. <br />
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"But still it was hard. Don't forget your other kids."<br />
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I will never forget Coy's prayer just after they got back from China. "...and please bless that Mom and Dad will care for us as much as they do for Maaike." Indeed, finding the right balance between Maaike's tender health and Coy & Kees' tender feelings is no simple task. We have tried, but there are days that feel like <i>Sophie's Choice</i>. Last week we missed Kees' only soccer game because Maaike was in surgery. Tonight I left Maaike crying hysterically with the nurse so that I could go to Coy's basketball game. The choices are never easy, but I am learning to and trying to let go of the guilt, because I am doing my very best.<br />
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To the woman in seat 8C and all the "other kids": I hope you know you are not loved any less. You are not less valued because you need less time. You are not less important because you are healthy. You are loved. You are valued. You are so important to us. I hope you know how special you are.Rian Krommenhoekhttp://www.blogger.com/profile/13107418785158412857noreply@blogger.com5tag:blogger.com,1999:blog-8658334604699617274.post-27013201862450397472011-09-16T23:04:00.000-07:002011-09-16T23:04:19.183-07:00The things people sayTo the lady at Disneyland who put me in tears: My daughter is not a freak.<br />
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To the window washer guy who came to our door: She doesn't just "seem" to have pretty eyes. Maaike has beautiful eyes and that isn't the only thing she's got going for her.<br />
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To the mother at Coy's swim lessons: Don't punish your child for being brave enough to ask me about Maaike instead of just staring. When you punish him you teach him not to reach out, not to connect, and that there is something shameful and wrong with being different. Being different is beautiful. <br />
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To the other kindergarten mother: Having a healthy baby isn't the only thing that matters. What matters is that no matter how they come they are ours to love, care for, and cherish.<br />
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To say that we were not prepared for people's reactions to Maaike is a gross understatement. I could not have fathomed the things that a few people have said. On the drive home from our Disneyland trip we were at our tipping point. The pointing, the staring, the waving their friends over to gawk, had brought us to our edge so when we stopped into a restaurant to grab a bite to eat and over heard a woman say to a man, "OMG. Did you see that baby," we were ready to snipe back, "Maaike do you see that crazy lady with red glasses and ugly hair." Definitely not our best moment, but a needed release and catalyst for our new stratagem.<br />
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Years ago I was moved by the story of a neighbor of ours who had two special needs children. Their oldest daughter was born with Trisomy 18 and miraculously lived til she was almost 16 years old. Their 4th daughter was then born with down syndrome. On one occasion she was out with both mentioned daughters as well as their other 3 daughters when someone pulled up behind her vehicle and yelled at her for parking in the handicap parking when she was obvious perfectly ambulatory. I think she had every right to lose her cool, but instead she walked over and lead the passenger out of their car and over to her van's side door to introduce her daughters. They apologized.<br />
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Learning a lesson in grace from our neighbor's reaction, our new approach is to step forward and introduce our dear Miss Maaike, because the moment you meet her you can't help but fall in love. I am still in process of summoning the courage and holding back the tears, but it feels right and absolutely imperative for Maaike to know there is no need to shy away from outside world or fear what ignorant people might say. Being different is beautiful.<br />
Rian Krommenhoekhttp://www.blogger.com/profile/13107418785158412857noreply@blogger.com11tag:blogger.com,1999:blog-8658334604699617274.post-9409528169984972742011-09-06T21:43:00.000-07:002011-09-16T22:08:58.100-07:00Waiting and prayingTomorrow was to be Maaike's first sclerotherapy treatment. We had hoped to get things started sooner than later so that her subsequent treatments would not linger into RSV season, but a sight temperature and a sometimes howling cough will push us back another 3 weeks. While I am disappointed I am also relieved. The thought of her tongue and cheeks swelling exponentially has me on an anxious edge. It will come eventually, but that day is not tomorrow. <br />
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Tonight was a battle to keep her oxygen levels up. Thankfully they have yet to drop below the 80's, but even at just one percentage of deviation the alarm goes off. I sometimes get to feeling that her machines are yelling at me. We tried all the usual stuff: up her oxygen, suction, wake her, but all in vain of a restful nights sleep for all of us. Then came the kneeling and the pleading. "Please help her. Please help us. Make it so the alarm stops." <br />
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I read the entire manual of her pulse-ox trying to figure out how to reset the alarms to go off below 88% instead of 90. That would help a ton and at those levels there is really nothing I can do, but alas the machine is somehow locked.<br />
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Then some inspiration. A deep suction, down below her trach, and then elevate the head of her bed. And so far it is working. We have dropped from 5 to 10 alarms a minute to 5 alarms an hour. I'm still uncertain about our nights sleep, but I am at least feeling we will get something. <br />
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I do not think there will ever be words to express to Maaike in her later years of all we went through, all we felt, and all the sleep we didn't get in order to save her, but even so, even now, it is worth it.<br />
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The alarm is sounding. I must go...<br />
<br />Rian Krommenhoekhttp://www.blogger.com/profile/13107418785158412857noreply@blogger.com1tag:blogger.com,1999:blog-8658334604699617274.post-15668171016343209162011-09-05T13:03:00.000-07:002011-09-05T13:16:14.272-07:00To Boston, to Boston to try a new doctor<div class="separator" style="clear: both; text-align: center;">
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Our trip to Boston was everything we hoped it would be. The specialists at Children's Hospital knew all the right questions and had all the right answers, granted some of those answers were not easy to swallow, but we feel confident moving forward with their recommendations, after all, they have actually seen cystic hygroma before. Amazing. The next step will be 3 to 4 rounds of sclerotherapy and then a tongue reduction in the spring. Thankfully one of the colleagues from the Boston Children's office just relocated in July to our hospital, Primary Children's hospital in July, so Maaike will receive her treatments here. We will most likely fly back to Boston for the tongue reduction, but one step at a time.</div>
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<br />Rian Krommenhoekhttp://www.blogger.com/profile/13107418785158412857noreply@blogger.com1tag:blogger.com,1999:blog-8658334604699617274.post-42093953103818510652011-07-18T13:06:00.000-07:002011-07-18T13:07:09.416-07:00Bringing baby homeI had no idea what I was up against when I brought Maaike home. Thankfully it is doable, but there are definitely some things I wish I had known before.<br />
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1. Before you are discharged a nurse and and respritory technician should be scheduled to meet you at home. They are not coming empty handed. They will bring at minimum 4 machines and several boxes and about 15 bags of medical supplies. When you are at the hospital there is a giant supply room where they hind all the stuff you didn't know you where using and many of the machines are built into the walls of the hospital. So have someone <span class="Apple-style-span" style="color: red;">clear out a closet</span>. And take home any bins they offer you at the hospital to organize all that stuff.<br />
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2. <span class="Apple-style-span" style="color: red;">Take notes</span>. Amazingly you will remember almost everything you have been told about how to care for your child, but for the 10% you don't remember and for teaching other's how to properly care for your child in the future, you are going to want every detail. On our first night home the RT didn't leave until midnight. I was exhausted, didn't take notes, and it would take many phone calls to get some simple information.<br />
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3. When we were discharged my husband Sid was still back in China with our other two kids so my mother-in-law drove up to follow me home. I was therefore alone in my car with Maaike in the back seat. Her pulse-ox alarmed several times and I found myself scrambling for places to pull off on the free-way. <span class="Apple-style-span" style="color: red;">Don't drive home alone. </span>I could have easily arranged for someone to be in the car with me, but I had no idea how nerve racking it would be.<br />
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4. <span class="Apple-style-span" style="color: red;">Don't discharge on a Friday</span>. It may seem like the best idea, especially if you spouse or family is more available on the weekends to help you get settled into your new life, but the problem is that many services, yes, medical services, are not open on the weekend should you need the help or have a question.<br />
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5. Just say "yes". If someone offers to bring in meals or help watch your other kids or mow you lawn let them do it. An old neighbor of ours organized friends in a different city to drive up meals to us for 15 days after we got home. I tried to graciously decline the excessive service, but my dear friend is stubborn and wouldn't have it any other way. I don't know what I would have done without their generous offering. We needed every single one of those meals and all the leftovers to make it through that first month. If no one has offered such help this is the time to speak up and let your stubborn friends know that you are going to need some help and could she/he please take care of it. <span class="Apple-style-span" style="color: red;">Just say "yes".</span><br />
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6. Take time to just be a mom and not your child's nurse. This amazing advice came to me from another trach mom Somer. She said, <span class="Apple-style-span" style="font-family: inherit;">"</span><span class="Apple-style-span" style="border-collapse: collapse;"><span class="Apple-style-span" style="font-family: inherit;">Remember that Maaike is not as fragile as she may seem. She is still a baby and will love baby things. I had a therapist tell me to stop treating Maisy like a patient and <span class="Apple-style-span" style="color: red;">start treating her like a baby</span> and it made a huge difference. I started to remember what my other kids liked at that age and to really play with her instead of just taking care of her." </span><span class="Apple-style-span" style="font-family: arial, sans-serif; font-size: x-small;"> </span></span><br />
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<span class="Apple-style-span" style="border-collapse: collapse; font-family: inherit;">7. Take a deep breath and remember <span class="Apple-style-span" style="color: red;">this is possible and you can do it!</span> This can be such an isolating time, but the fact is that you are not the only one who has or will go through this. After all, I'm here. </span>Rian Krommenhoekhttp://www.blogger.com/profile/13107418785158412857noreply@blogger.com3