tag:blogger.com,1999:blog-88369995053383224812024-03-05T21:40:03.212-08:00Milk TapNourishing food for thought while raising young childrenAnonymoushttp://www.blogger.com/profile/11492923350546048413noreply@blogger.comBlogger7125tag:blogger.com,1999:blog-8836999505338322481.post-73453687913238670822015-03-31T19:11:00.000-07:002015-03-31T19:11:12.121-07:00Why G-tubes are GREAT, plus a Demonstration by Avery<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAXnGEWgfQQ804AEutOPzBtB2YBMdmA3RVjlhy-KgCjGZAwYudzK0IGF3glpC8MN6XEjgoKfcPZrAXOQKTVDTfbFxZTSZNWZ4Kg0A_h0xKzICauaq19A1vR12GDeSh6rqQgu8h8DP4Sng/s1600/IMG_20150323_151416_983.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAXnGEWgfQQ804AEutOPzBtB2YBMdmA3RVjlhy-KgCjGZAwYudzK0IGF3glpC8MN6XEjgoKfcPZrAXOQKTVDTfbFxZTSZNWZ4Kg0A_h0xKzICauaq19A1vR12GDeSh6rqQgu8h8DP4Sng/s1600/IMG_20150323_151416_983.jpg" height="320" width="240" /></a></div>
<div class="MsoNormal">
I’m staying up late to write this. I have another hour to go until I feed my son
his last meal for the day. He’s asleep,
and he will sleep during the feed. It’s
one of many blessings I remind myself of when I think about his feeding
circumstance. Matthew is fed via
g-tube. <o:p></o:p></div>
<div class="MsoNormal">
</div>
<a name='more'></a><h2>
Matthew's Journey </h2>
<br />
<div class="MsoNormal">
We went 6 months after his birth trying to develop his
swallowing skills since he was born with micrognathia (small, backed-up chin)
and a cleft palate, among other 22q.11 Deletion Syndrome anomalies. Doctors were hopeful that he’d feed better
after his jaw surgery. I pumped
breastmilk like a heifer, and we used all sorts of great bottles. He was still struggling. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Finally we consented to the g-tube surgery as an add-on to
some other surgeries he was having at the time.
Doctors were confident he just needed some time and that he would have
great success after his cleft palate repair scheduled out another 6
months. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
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It wasn't until he had multiple swallow studies, sometimes
called “cookie swallows” that we learned he had some other swallowing
issues. His cricopharyngeal sphincter
(cry-coe-fair-in-jele) was supposed to open and allow food down into the
esophagus. His often closes halfway
through a swallow, forcing the food to get stuck or move back up the throat and
into DANGER land. That’s what happens to
solid food. </div>
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<br /></div>
<div class="MsoNormal">
Liquids are worse.
They have a one stop ticket to the lungs. There are flaps that are supposed to protect
your windpipe or trachea when you eat and drink. “His are lazy” said one techie. I like to think of them as just not knowing
any better. They could learn after
all. Lazy is hard to fight. Ignorance can be tackled, and since he has
low muscle tone, he might need to bulk up to get those flaps in shape. </div>
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<o:p></o:p></div>
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<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieOhMaToug2gRvOMfzB9EIOPC52nVVm6vJQC4zoPn1s-i7nY6QoJQVVZLQ85eK_XISVZHtCaZARgDwFuUBbW0j-HtjgI2bD-kj_AJRRp1g4Ii_TGkbOJnCoJ4mABU77ZjzG3P6naSqlHo/s1600/IMG_20150328_140712_738.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieOhMaToug2gRvOMfzB9EIOPC52nVVm6vJQC4zoPn1s-i7nY6QoJQVVZLQ85eK_XISVZHtCaZARgDwFuUBbW0j-HtjgI2bD-kj_AJRRp1g4Ii_TGkbOJnCoJ4mABU77ZjzG3P6naSqlHo/s1600/IMG_20150328_140712_738.jpg" height="200" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Matthew took photo while I fed him.</td></tr>
</tbody></table>
<div class="MsoNormal">
So now we are in a long term relationship with the g-tube. Matthew may be able to develop the skills to
help him swallow, there may be surgeries in the future that could help, or he
might always have this extra belly button that supports his wonderful,
beautiful life. </div>
<o:p></o:p><br />
<h2>
<b>The Lists</b></h2>
<div class="MsoNormal">
<b>Pros</b><o:p></o:p></div>
<div class="MsoNormal">
</div>
<ol>
<li>Can be fed while sleeping</li>
<li>Can be fed while sleeping in the car</li>
<li>Can be fed while driving down the road (if someone else is
driving)</li>
<li>Can still get calories in when sick</li>
<li>Making food can be fun and way healthier than what
non-tubies might eat</li>
<li>There are amazing communities on Facebook to offer support
and advice, especially with blending foods.</li>
<li>This device helps so many people survive. </li>
<li>The button is quite small.
It barely shows under clothing, and you don’t have to be extra careful
with it. </li>
<li>It’s easy to change.
Avery helped me replace his last week.
Check out her video.</li>
</ol>
<o:p></o:p><br />
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<o:p></o:p></div>
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<o:p></o:p></div>
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<o:p></o:p></div>
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<o:p></o:p></div>
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<o:p></o:p></div>
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<o:p></o:p></div>
<div class="separator" style="clear: both; text-align: center;">
<iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/Py3lq_BsIEI/0.jpg" src="http://www.youtube.com/embed/Py3lq_BsIEI?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
<div class="MsoNormal">
<b>Cons</b><o:p></o:p></div>
<div class="MsoNormal">
</div>
<ol>
<li>All food is in contact with plastic, most likely with BPA and
other gross stuff</li>
<li>It’s extra work making food, cleaning equipment, and
feeding.</li>
<li>Food squirting on ceiling, furniture, and people happen more
often than not.</li>
<li>Doctors often push formulas.
Ugh. No thank you. Would you drink that every day?</li>
<li>Most people don’t feel comfortable feeding him like this, so
NO being away for more than 3 hours. </li>
</ol>
<o:p></o:p><br />
<div class="MsoNormal">
<o:p></o:p></div>
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<o:p></o:p></div>
<div class="MsoNormal">
<o:p></o:p></div>
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<o:p></o:p></div>
<h2>
<o:p>Menu </o:p></h2>
<div class="MsoNormal">
Well, it’s time to go warm up his food. On the menu tonight, we have kefir milk,
regular local whole milk, avocado, carrot, swiss chard, plum, kiwi,
blackberries, hamburger, whole grain cereal, coconut oil, and red palm oil. Yum.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
Want to suggest something else for a meal, like something I
can get at the farmer’s market? Comment
below, and may God bless you all! <o:p></o:p></div>
Anonymoushttp://www.blogger.com/profile/11492923350546048413noreply@blogger.com0tag:blogger.com,1999:blog-8836999505338322481.post-44219476062990708522014-06-03T11:37:00.000-07:002014-06-03T11:38:26.431-07:00Babies Born Clubbing<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFqVUTuEWls2Yowd68xf__5JLMZj9WnKjG9Hobc-1LQikVHT48VBExEejKe0CM0A2wTT8TwlIdON6RgnPyTIRr6IBWXfbg25-JiBpg9cGwG8i8isXTPcMBDlYsWZHVJqfoLXlgo5bpYUU/s1600/prego+pic.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFqVUTuEWls2Yowd68xf__5JLMZj9WnKjG9Hobc-1LQikVHT48VBExEejKe0CM0A2wTT8TwlIdON6RgnPyTIRr6IBWXfbg25-JiBpg9cGwG8i8isXTPcMBDlYsWZHVJqfoLXlgo5bpYUU/s1600/prego+pic.jpg" height="320" width="283" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Photo by Rebecca Reck</td></tr>
</tbody></table>
<div class="MsoNormal">
While pregnant, my baby would be moving and grooving so much
that I often thought he was clubbing in there.
I imagined he was shaking it to awful techno music like I did once upon
a time ago. A week following a routine
ultrasound, I was attending an uplifting Christian leadership conference. I was having an amazing time with my 3 year
old and round belly. We were dancing and
worshiping God. I kept my cell off for
days. When I turned it on, there were a
dozen missed calls and many urgent messages from my nurse practitioner. I called, and she explained that the doctor
had originally missed a few anomalies.
Our son would have a clubfoot.
Cue the techno music. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
God had me right where I needed to be that week. I was surrounded by prayerful Christians and
had a beautiful conversation with one of the female leaders. I was granted peace. I left there and loved my son even more. I have learned a lot this past year. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b>What You Should Know about Clubfoot</b></div>
<div class="MsoNormal">
</div>
<ol>
<li>The name clubfoot comes from how the shape of the foot <b>looks
similar to a golf club</b>. It does not come
from how many of the babies are born dancers.<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEht97EOb2HtTKtiBz7HVdJtVq_QHLCo3ayuxdSWuKNaxZbwDplbC2Vdk8MlZvXYkeP9P4cJegpcwZEpdneu4y1XoN11G85eSLzuvsxUgA1hczblxnYAp_hKOVkycykwj_CFhx1lQ1Fbn6k/s1600/0831131815.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEht97EOb2HtTKtiBz7HVdJtVq_QHLCo3ayuxdSWuKNaxZbwDplbC2Vdk8MlZvXYkeP9P4cJegpcwZEpdneu4y1XoN11G85eSLzuvsxUgA1hczblxnYAp_hKOVkycykwj_CFhx1lQ1Fbn6k/s1600/0831131815.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">You can see Matthew's clubfoot tangled with cords.</td></tr>
</tbody></table>
</li>
<li>There are many <b>famous people</b>, including amazing athletes, who
were born with a clubbed foot or two including Damon Wayans, Dudley Moore,
Charles Woodson, Kristi Yamaguchi, Mia Hamm, Troy Aikman, and even King Tut. </li>
<li>Some estimate that 1 in 1000 children are born with a clubfoot,
making it<b> fairly common</b>. It can be the
only anomaly for the child or be part of a genetic syndrome such as Downs,
22Q.11 Deletion, etc. <table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSbo_1HtdCnLyBAOZuk8lUNB-k1s6G8Zw2fyE3-df5rnbe9pW7JnF8YY9UFu52FB5TNTLK6Y7Q9ZWQcfHqUKWTCcqFuqi_Pk3894JgmEXO20JwiQ1PIA_eaWnokgy2pHkLkh7O6035FV8/s1600/1203130919.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSbo_1HtdCnLyBAOZuk8lUNB-k1s6G8Zw2fyE3-df5rnbe9pW7JnF8YY9UFu52FB5TNTLK6Y7Q9ZWQcfHqUKWTCcqFuqi_Pk3894JgmEXO20JwiQ1PIA_eaWnokgy2pHkLkh7O6035FV8/s1600/1203130919.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Casting Phase with Art by Avery</td></tr>
</tbody></table>
</li>
<li>The most common <b>treatment </b>includes early casting to correct
the shape, a surgery to lengthen the Achilles tendon, and bracing to prevent
relapse. The bracing period may be for
24 hours for the 1<sup>st</sup> year and then only while sleeping for 4 or 5
years.<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiH6BOr3txhhw2bFDOwJHbpDRJ6H2oGv7Zxy-EAfPJKzycZIn9FvY5RZQots3krEAN0h4C8fCr-aPHugHHnUmXdBVKdg4km79cDLMTJHWq5WTMcH0I7bOFFJ27CFNmNgcmNdTsywETb16o/s1600/1203130945.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiH6BOr3txhhw2bFDOwJHbpDRJ6H2oGv7Zxy-EAfPJKzycZIn9FvY5RZQots3krEAN0h4C8fCr-aPHugHHnUmXdBVKdg4km79cDLMTJHWq5WTMcH0I7bOFFJ27CFNmNgcmNdTsywETb16o/s1600/1203130945.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Foot is in correct position following casting. </td></tr>
</tbody></table>
</li>
<li>Cutting off the feet of women's tall knee-high socks make great <b>leg warmers</b>. Covering the cast is especially important. Changing diapers is easier when pairing these with onesies during the bracing stage. Covering the bar with pipe insulation and a spare leg warmer can prevent a few bruises but not all. <table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiW6G5uqEyfnK7XLzEFELntjQCbGarY48LXe53u3jYaf1huGeXgwUQw8hZjX-WBBoUik7-dCiUov4pYsTWJZi-zRHN0snJeyhCgHumVj3CxV_ghnwshIMqnzywxdAmZwZFi3kxMAZmerY/s1600/brace.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiW6G5uqEyfnK7XLzEFELntjQCbGarY48LXe53u3jYaf1huGeXgwUQw8hZjX-WBBoUik7-dCiUov4pYsTWJZi-zRHN0snJeyhCgHumVj3CxV_ghnwshIMqnzywxdAmZwZFi3kxMAZmerY/s1600/brace.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Matthew in stylin' with his brace, leg warmers, and sister.</td></tr>
</tbody></table>
</li>
</ol>
<br />
<br />
<div class="MsoNormal">
June 3<sup>rd</sup> is <b>World Clubfoot Awareness Day</b>. Please <b>share </b>this with friends for my son
Matthew. If you have a message for him,
we’d love your comments below. God bless
you all! </div>
Anonymoushttp://www.blogger.com/profile/11492923350546048413noreply@blogger.com0tag:blogger.com,1999:blog-8836999505338322481.post-48565473461628665842014-05-12T17:30:00.000-07:002014-05-12T17:45:25.441-07:00Bee Real: 6 Smart Strategies for when Kids are Scared Silly<div class="MsoNormal">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiExkqOtvz46kvQlcWBTOgr4iVHWE4-_rolL359IEKoC4rvbCGnC9_KGh-GzN602e1QsInZ7jfHti6m2YBcR86Sdoh-VmU-RtvYgawhalLozSDOGdjKc7mwwuq7FRwoZ0vFf3VOAXEKMwE/s1600/nectar-worker-insect-bee-sting-honey-pollinate_121-68167.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiExkqOtvz46kvQlcWBTOgr4iVHWE4-_rolL359IEKoC4rvbCGnC9_KGh-GzN602e1QsInZ7jfHti6m2YBcR86Sdoh-VmU-RtvYgawhalLozSDOGdjKc7mwwuq7FRwoZ0vFf3VOAXEKMwE/s1600/nectar-worker-insect-bee-sting-honey-pollinate_121-68167.jpg" height="229" width="320" /></a>Perhaps this sounds familiar to you too. You’re outside enjoying the warm sun and cool
breeze with your family, throwing a ball or hunting mushrooms, when a shrill
scream pierces the air. Your frantic
child is running toward you looking like she saw a ghost. Did she stumble upon a dead body? Perhaps a bear is chasing her down? Nope.
It’s a bee. 20 feet away. On a flower. </div>
<a name='more'></a><br />
<div class="MsoNormal">
I have a sister who still reacts to these buzzing creatures
in the same way. I just want to shake my
head. What do we do when irrational fear
takes control of our children? We are
trying the following strategies and seeing great success so far:</div>
<div class="MsoNormal">
</div>
<ol>
<li><b>Knowledge is power</b>. We have heard that often and for good reason. When we understand the how and whys of our
fears, we take away their control. To
help my daughter understand why bees are so important, we are talking, reading,
and watching videos about bees very often.
We’re also learning about why they sting. A review session previews every trip outside
for now.</li>
<li><b>Let’s pray about
it. </b>Our God is amazing and can help
us with anything. Knowing this, we are
praying that He will help us not to fear one of His creatures. We pray this often throughout the day and
always following a “Bees are friends,” review session. </li>
<li><b>Recite
scripture. </b>God continually reminds
us to trust Him in His Word. Teach your
child to recite a favorite anti-fear verse when scared. We’re using Isaiah 41:13 NIV, “For I am the
LORD, your God, who takes hold of your right hand and says to you, Do not fear;
I will help you.” You may print a FREE
chart to aid in memorizing this verse by <a href="http://htmlimg1.scribdassets.com/3hmss7qmio3rqn7o/images/1-1f1b020479.jpg" target="_blank">clicking HERE</a>. </li>
<li><b>Remember when you
used to be scared of ________? </b>Use
anything relevant. Perhaps your child
used to not like peas as a baby. Use
it. A few months ago, a very short-lived
fear of ladybugs was tackled in our home.
It lasted for approximately 18 hours.
I remind her often of how smart she is for coping with that fear. This reinforces that fears can be temporary
and that she is very capable of doing it again.</li>
<li><b>Teach an acceptable
response. </b>Running and screaming is
not acceptable when it comes to bees, that goes for you, too, dear sister. This response tells people that there is a
huge danger. What is okay? Freeze and pray is acceptable. Another response is to WALK slowly and
quietly away. Practice this away from
the fear many times before trying it with the bees.</li>
<li><b>Use the tips yourself
and be a role model. </b>Are you scared
of bees too? Maybe there is another fear
that you have allowed to rule your life for too long. Try these tips and master that fear for your
children’s benefit. Talk to them about
your trials and “bee” each other’s cheerleaders. </li>
</ol>
<br />
<div class="MsoNormal">
So far we have been coping with this fear for 5 days, and
already she is only screaming and running 1/5 of our visits outside. I’ll give an update when I no longer see any
fear from her. </div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
What fears have your children coped with recently? Do you have another strategy worth
mentioning? Please share your stories,
favorite anti-fear verses, and questions below, and may God bless you today and
everyday! </div>
Anonymoushttp://www.blogger.com/profile/11492923350546048413noreply@blogger.com0tag:blogger.com,1999:blog-8836999505338322481.post-37215145706387518982014-04-21T16:12:00.000-07:002014-05-12T17:49:58.417-07:00Introducing my 22Qtie Pie<div class="MsoNormal">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_dFzPtXYTNR8dMABLiVJgwR8BlTy3jzUZHhIzxeTCSKt8kPNHLlK_Fn-AlH3BXJ5lV7NZzy-PrjfIVLBtQxOLxCvDWBK_VLF7x8lqsjSa7TWe2QnqiV-Gvq5kEje-v0gTkxXQg_RnRPg/s1600/IMG_20140425_125949_522~2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_dFzPtXYTNR8dMABLiVJgwR8BlTy3jzUZHhIzxeTCSKt8kPNHLlK_Fn-AlH3BXJ5lV7NZzy-PrjfIVLBtQxOLxCvDWBK_VLF7x8lqsjSa7TWe2QnqiV-Gvq5kEje-v0gTkxXQg_RnRPg/s1600/IMG_20140425_125949_522~2.jpg" height="319" width="320" /></a></div>
Having children is a challenging responsibility. Change that.
Having children and attempting to raise them WELL is a challenging
responsibility. It is a juggling act
where you’re juggling with their lives.
Add that one of them has a disability, and now you’re juggling with one
of your arms tied behind your back. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My one arm act hit the stage when I gave birth to my
son.<br />
<a name='more'></a> Matthew. My gift from God. </div>
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Matthew was born at 41 weeks following an amazing VBAC
(vaginal birth after cesarean) with no drugs whatsoever. NONE.
It was a choice we made that may have saved his life. Any drugs during the delivery may have
compromised his breathing, and we weren't taking any chances.</div>
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We knew Matthew would be born with a clubbed foot. We also knew he had a dilated kidney and a small
chin. When he was born, we learned that
he had a cleft palate due to that small chin.
This is called Pierre Robin Sequence.
He also had some other anomalies (aka differences or problems or things
that scare parents when they Google them even though they know better than to Google
them). </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
With all of his “interesting” differences, he seemed very
healthy and was discharged from the hospital like typical babies.
He would nurse for short feedings and get pumped breast milk in bottles
with squeezable bag liners. He was happy
and slept prone on my chest which made me happy. His sister adored him as did the rest of the
family. </div>
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We ended up in the emergency room 3 weeks later when he wasn't
gaining weight. My son was not thriving. Apparently you cannot eat well if you can't breath well, and Matthew's tongue was blocking his throat
often. Often… as in hundreds of times a
day. This was a precarious time. </div>
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We had our 1<sup>st</sup> surgery soon after that to
lengthen his jaw and put his tongue in the proper place. Matthew was also given a complete work over
to find any and all anomalies and had blood taken for genetic testing. </div>
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<br /></div>
<div class="MsoNormal">
The verdict… Matthew has 22Q.11 Deletion Syndrome. I call him my 22Qtie Pie. </div>
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<img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihXR_SyXFNewvILGjCOTfOPEGmMZBS2JVaO2Fs3FodZw9ZUxMMIBJC0F3xnLYGA62oEGgdSmN3uOcKOjacyuAwsw9qqmbA00gbOzxG40Cxlvdqm5Bza20zSuZQQyJIHmReRcWARZL_3Sw/s1600/22QtiePie.jpg" height="320" width="320" /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://www.facebook.com/22QtiePieBook" target="_blank">22Qtie Pie Book coming soon! "Like" it on Facebook.</a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
There are some great eCards going viral about children with Down’s
Syndrome. They say, “It’s not that I have an extra chromosome. Maybe you’re just missing one!” Well this is literally true for Matthew and
other 22Qtie Pies. They are missing part
of their 22<sup>nd</sup> chromosome. </div>
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<br /></div>
<div class="MsoNormal">
This syndrome is the most common deletion syndrome, affecting
more than 1 in 4000 people. It isn't
widely known though, because it can manifest in so many ways. For instance, most people with this syndrome are
born with severe heart defects. Matthew
only had 2 minor ones that resolved on their own. We praise God daily for this. </div>
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<br /></div>
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Matthew is now 8 months old.
He is still a happy boy. He has
survived 4 surgeries and hopefully will only have 1 more. </div>
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<div class="MsoNormal">
I am surviving this act too.
With God, I am more than surviving.
I am ROCKING this act. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I have been juggling the challenge of raising 2 children,
educating myself and others on this syndrome, being a wife, pumping breast milk
2-4 hours a day, writing, traveling to doctor appointments, and sleeping (on
better thought, let’s disregard the sleep part.) </div>
<div class="MsoNormal">
<br /></div>
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Having children and attempting to raise them well may be a
challenge. I have always enjoyed a good
challenge.</div>
<br />
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<br /></div>
<div class="MsoNormal">
Now it’s your turn to share your challenges. Educate us on your child’s disability. Tell us about your juggling act. Also, if you've discovered some magical way
to find sleep, please share.
Please. PRETTY please. May God bless you!</div>
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</div>
Anonymoushttp://www.blogger.com/profile/11492923350546048413noreply@blogger.com0tag:blogger.com,1999:blog-8836999505338322481.post-51345366358023335082014-04-14T13:09:00.000-07:002014-05-12T17:50:40.900-07:00Ten Tips to Trim Tech Time<div class="separator" style="clear: both; text-align: center;">
</div>
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iPhones, iPods, iPads… I don’t know about you, but I don’t
want my children to be iTech-Heads. You
know what I’m talking about, right?<br />
<a name='more'></a> They
are the kids who are ALWAYS on their phones or tablets or videogames. They are more likely to grunt than use human
words. They are only outside while
walking to or from the car. “Multitasking”
to them means to look at an adult in the eyes while simultaneously
texting. Sure this sounds like most
teenagers nowadays. Also sounds like I’m
describing zombies. </div>
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<br /></div>
<div class="MsoNormal">
So to prevent these zombie-like iTech-Heads, some people are
suggesting that we keep children away from all technology until they are
twelve. Since that is IMPOSSIBLE, and
because there is a place in our lives for technology, let’s work at limiting
the time we are on during the day. You
may use one of these tricks at a time or in combination with others. </div>
<div class="MsoNormal">
<b><i><span style="font-size: 14.0pt; line-height: 115%;"><br /></span></i></b></div>
<div class="MsoNormal">
<b><i><span style="font-size: 14.0pt; line-height: 115%;">“You may have tech-time…”<o:p></o:p></span></i></b></div>
<div class="MsoNormal">
</div>
<ul>
<li><b>When it’s dark and
the sun is down. </b>The Disney movie “Frozen”
has a popular line, “The sky’s awake, so I’m awake!” I add “AND playing too!” This worked very well with our 4 year old for
a while. She wouldn't ask to get on her
iPad until dusk. The problem with this
one is that during the winter she would get more time than I would like, and in
the summer, it sometimes wouldn't be dark until after bedtime. </li>
<li><b>After all of your
chores are done. </b>Want to see beds
being made at record speed, animals fed, and other daily chores completed without
nagging? This is the deal for you, my
friend! </li>
<li><b>After ALL house
chores are done. </b>The beauty in this
one is that siblings are encouraged to help each other and encourage each other
to get their work done. You can have
them help you with yours as well. This
is one of the perks to having children, after all. </li>
<li><b>When your baby
sibling is napping. </b>This became our
go-to rule to help keep the house quiet during baby brother’s nap times. Our daughter was also quick to console him if
he startled during the nap. Win-Win. </li>
<li><b>After your school
chart is done. </b>We have a “school
chart” that has different types of activities that our daughter is to complete
during the day. For instance, she needs
to do some writing or art, math or science, exercise, Bible study, etc. Using this chart offers her some ideas for
what to do during the day whenever she “thinks” she’s bored.</li>
<li><b>After ALL school
charts are done. </b>Here, siblings can
encourage each other again. Plus they
can play together to get the charts done even faster. Get the blocks out Bro! It’s math time! </li>
<li><b>IF you do this app
first. </b>We sometimes use this at the
end of the day to help our daughter finish up the school chart. So if she did MOST of the chart, she can get
on at dusk and finish up handwriting and science on the iPad. </li>
<li><b>After reading real
books for 30 minutes. </b>Many
educational studies have found that children who read for 30 minutes every day
have more successful lives than those who do not. Make this a priority in your home by starting
young. Read to your children for this time
if they are not reading on their own yet.
</li>
<li><b>For this amount of
time each day. </b>This was the rule in
our home while growing up. We could play
on our Nintendo, or (ahem) Atari, for 30
minutes a day. Some tablets are allowing
you to set timers that lock them up after the set time. This is fabulous.</li>
<li><b>As a reward for _____. </b>We generally use this to offer extra time
for doing something extra kind or awesome.
“You may send 3 Snap Chats out, since you climbed the tree house ladder
all by yourself.”</li>
</ul>
<br />
<br />
<div class="MsoNormal">
We hope you may use these tricks to limit tech time in your
home. With these, perhaps we can stop
Zombie iTech-Heads from taking over the world. If you tried one of these or another tip that
was successful, please comment below, and have a most BLESSED day! </div>
Anonymoushttp://www.blogger.com/profile/11492923350546048413noreply@blogger.com0tag:blogger.com,1999:blog-8836999505338322481.post-55225419687983740152014-04-08T14:22:00.003-07:002014-05-12T17:50:53.170-07:00Top 10 FREE Droid Milk Tap Apps<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTpRxhqZd9UMHd8OJ1wNlswODV1flYcJhGSGFnMtFe-AcB-rM0s1OWcTKPo2PBGaBvKapizqqrrSCKJfL8gIRZLdOPjPlDGya2FFJ2bj7NAcSHt71piWRiObCKOojzaL6-sutXp2lYP7E/s1600/square.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="" border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTpRxhqZd9UMHd8OJ1wNlswODV1flYcJhGSGFnMtFe-AcB-rM0s1OWcTKPo2PBGaBvKapizqqrrSCKJfL8gIRZLdOPjPlDGya2FFJ2bj7NAcSHt71piWRiObCKOojzaL6-sutXp2lYP7E/s1600/square.JPG" height="320" title="www.milk-tap.blogspot.com/2014/04/top-10-free-droid-milk-tap-apps.html" width="319" /></a></div>
<div class="MsoNormal">
Are you breast feeding, exclusively pumping, or hoping to
join the club following the birth of your babe?
Perhaps you’re like my husband and you’re studying for your dream job of
becoming a lactation specialist. Well we
have the best Milk Tap apps for android phone users, and they’re FREE!<br />
<a name='more'></a></div>
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</div>
<ol>
<li><b>General Breastfeeding
Information </b>Check out the <i><a href="https://play.google.com/store/apps/details?id=com.sarachana.breastfeeding" target="_blank">Savvy Breastfeeding Guide</a></i> by Sara Chana. This app has information that can help you
solve over 98% of all breastfeeding challenges with its 100+ videos, 350
articles, and many informational photographs.
Dads even report to benefit from this app. </li>
<li><b>Ultimate Baby
Log </b>Track breastfeeding and pumping sessions
and a whole lot more with <i><a href="https://play.google.com/store/apps/details?id=com.luckyxmobile.babycare" target="_blank">Baby Care</a></i>. We love that you can also use this as a baby
diary to record many firsts. Other notable
features of this app include the ability to use with multiple babies, for
teething information, and for tracking vaccines. If you don’t have reminders set up, you may
have to go into features and general setup to turn off the icon that will most
likely annoy you as it did us. </li>
<li><b>Hydration </b>Keep an eye on your water intake with <i><a href="https://play.google.com/store/apps/details?id=com.northpark.drinkwater" target="_blank">Water Your Body</a>, </i>because drinking too
much water or not drinking enough will cause problems with milk
production. We saw an increase of 2-4
additional ounces of milk per day after utilizing this app. For those of us exclusively pumping, this is
HUGE. </li>
<li><b>Help with Milk
Letdown </b>A crying baby will give many
innocent bystanders an instant headache.
For a Milk Tapped mom, this sound can signal a Hulk-like
transformation. Shirt splitting, milk spewing…
a baby or a pump needs to be attached ASAP.
If you need to pump at work or while away from your baby, you can use
these sounds to your advantage. <i><a href="https://play.google.com/store/apps/details?id=cat.ereza.sounds.baby" target="_blank">Baby Sounds</a></i> has over 70 baby sounds
including many crying babies. After
letdown, you may enjoy exploring the other sounds as well. </li>
<li><b>Motivation </b>Do you like those motivational posters
that are pasted on office walls everywhere?
You can create your own poster for one of your phone’s screens to give
you some reinforcement when the pain seems unbearable. With the <i><a href="https://play.google.com/store/apps/details?id=com.widget.motivator" target="_blank">MotivatorWidget</a></i>, you can use a photo of your child to help with letdown while
away. You can put a picture of that gift
you’re going to buy yourself when you make it to your next Milk Tapped goal. Our favorite thing about this app is that is
requires NO permissions. It’s true. </li>
<li><b>Relaxing Sounds </b>Staying relaxed while nursing or pumping
can help with milk production and letdown.
Babies seem to latch better while relaxed as well. If your iPod music is less than baby-friendly, then <i><a href="https://play.google.com/store/apps/details?id=com.zodinplex.naturesound" target="_blank">Nature Sounds – Relax and Sleep</a></i> may help
you with their calming audio therapy. </li>
<li><b>Great Reading </b>Another way to help you relax is to enjoy
some great reading. If you don’t have
the <i><a href="https://play.google.com/store/apps/details?id=com.sirma.mobile.bible.android" target="_blank">Bible App</a> </i>yet, consider adding
this awesome resource. You can access
hundreds of reading plans and devotions including many tailored to parents. It will even read to you. </li>
<li><b>Flashlight </b>Prior to upgrading to my newest phone, I
was living in a dark age without a camera flash. My pictures were not the only things to
suffer. I was not able to use the very
clever <i><a href="https://play.google.com/store/apps/details?id=com.surpax.ledflashlight.panel" target="_blank">Flashlight</a></i> app. This app is a must for late night diaper
changes, feedings, and pumping sessions.
It also has a strobe effect that can be used if stranded along the road. </li>
<li><b>Safe Medications </b>Are you interested in an alternate
therapy or perhaps you want to double check what a doctor has prescribed? Doctors are, after all, human and can make
mistakes. Then the <i><a href="https://play.google.com/store/apps/details?id=es.porquenohacerlo.lactanciabebe.en" target="_blank">Lactation Drugs</a></i> app may come in handy. There are over 1500 medicines, herbal
remedies, and alternate therapies listed in this no-frills app. Remember to always talk to your doctors as
well. </li>
<li><b>Professional Help </b>If you’re looking for breast milk feeding
support, La Leche League has many free resources and volunteers for you, but if
you don’t have the time to hunt for this help, there are professional certified
lactation doulas that you can search for with the <i><a href="https://play.google.com/store/apps/details?id=com.app_cntrpcappa.layout%20%20%20" target="_blank">CAPPA Member Search App</a></i>.</li>
</ol>
We hope you enjoy these FREE Milk Tap apps. Which one is your favorite? Do you have another that didn't make the
list? Please comment, and have a blessed
day!Anonymoushttp://www.blogger.com/profile/11492923350546048413noreply@blogger.com0tag:blogger.com,1999:blog-8836999505338322481.post-6823757735952410152014-04-07T12:40:00.000-07:002014-05-12T17:51:07.220-07:005 Things to Try in the Event of Spilt Milk<div class="MsoNormal">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiX66D8GVDinIu3N62TWFL9DkJ9PZd40olwN-JsNnmJ-oDS8ZW9RufzaIyzhNZGpQkw6bCcwUJs9CXWlsim3uS6QAlgcV6zB8JXy5G6kXYX3sEwfxkSasfM-ddlNrasnX8fmmwP6pDgauE/s1600/IMG_20140326_105144_570+(2).jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiX66D8GVDinIu3N62TWFL9DkJ9PZd40olwN-JsNnmJ-oDS8ZW9RufzaIyzhNZGpQkw6bCcwUJs9CXWlsim3uS6QAlgcV6zB8JXy5G6kXYX3sEwfxkSasfM-ddlNrasnX8fmmwP6pDgauE/s1600/IMG_20140326_105144_570+(2).jpg" height="189" width="320" /></a></div>
<br />
It looked like spilt milk… because it was, in fact, spilt
milk. Whoever said that you shouldn’t
cry over this precious food must not have been a mother who was exclusively
pumping. Every. Drop. Counts. Now many of those drops, almost 2 ounces of
them, were soaking into my pajamas. Did
I mention it was 2 in the morning?
Awesome.</div>
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<br />
So what should you do if, I mean WHEN, this happens to
you?<br />
<a name='more'></a> Consider the following:</div>
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</div>
<ol>
<li><b>Take 3 deep breaths.</b> You’ll need a clear head to continue without
adding tears to the mess. I started
doing this in order to model this coping strategy for my daughter. It works surprisingly well. Now I do it for me.</li>
<li><b>Give thanks.</b> Thank our Heavenly Father that you can even
make breast milk. Many women are not
able to do this beautiful task for their children. I’ve been exclusively pumping for more than 8
months now. It is amazing how a quiet
moment with God can lift our spirits and remind us of the important
things. I would rather spill 2 ounces
than not be able to even make them.</li>
<li><b>Get up and clean up.</b> You may have to force yourself into this
action as I did on that late night. I
thought about just going to bed in my wet pjs.
I’m very glad that I changed. You
will too.</li>
<li><b>Decide if you need
more milk.</b> I was fortunate that I
had extra milk in my son’s feeding bag.
I didn’t need to get any additional milk out. If I would have needed it, I would have taken
it from my frozen supply. If I put in
another pumping session, I could have possibly squeezed out another ounce. </li>
<li><b>Write about this
moment.</b> Journal your Milk Tap
triumphs and failures. Your child may
want to hear about it someday. She may
need some encouragement when she’s a breastfeeding mama. You may even be able to inspire other mothers
out in cyber world. Go ahead and put it
out there.</li>
</ol>
Here’s your chance. Do
you have a spilt milk story you’d like to share? Have these strategies or another strategy not
mentioned helped you in your time of lactation agitation? Please share and have a blessed day!Anonymoushttp://www.blogger.com/profile/11492923350546048413noreply@blogger.com0