tag:blogger.com,1999:blog-6024446910230966662024-03-13T19:33:45.577-04:00Dancing Through the Tulipsis the story of one family's journey through life with a very special child with Down syndrome and a complicated medical history and how we have learned to DANCE through the tulips.Mama Mason-Mannhttp://www.blogger.com/profile/06917976774636808205noreply@blogger.comBlogger325125tag:blogger.com,1999:blog-602444691023096666.post-74484179129500791532014-09-22T09:34:00.001-04:002014-09-22T09:39:05.961-04:00Our Elopement Safety Plan<br />
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I've been going back and forth on Facebook trying to explain in short answers how we TRY to keep Chloe safe from bolting, eloping, running, escaping, etc., etc. So I thought I'd make it easier on everyone and lay out our Current Chloe Safety Plan.</div>
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<a href="https://scontent-b-lga.xx.fbcdn.net/hphotos-xpf1/v/t1.0-9/10377239_10152524359749528_5397456522890927784_n.jpg?oh=2121bf3ab1a002f71048a293d6ee3786&oe=5419C624" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://scontent-b-lga.xx.fbcdn.net/hphotos-xpf1/v/t1.0-9/10377239_10152524359749528_5397456522890927784_n.jpg?oh=2121bf3ab1a002f71048a293d6ee3786&oe=5419C624" width="150" /></a>First and foremost, we are VERY lucky to live in a town that has just implemented the Project Lifesaver Program <a href="http://www.projectlifesaver.org/">http://www.projectlifesaver.org/</a> which has outfitted 6-year-old daughter with Down syndrome, Chloe, with a radio transmitter bracelet which she wears on her ankle. IF she were to get out AND get lost the police and the first responders in our town are trained to respond IMMEDIATELY and can locate her from up to a mile away. As I mentioned, it is a radio transmitter so it works when GPS signals might fail (like in the woods, or in water, God forbid!) Chloe HATES wearing bracelets, but the officer was wonderful about introducing it to her and she wears it without a problem. It never comes off - she wears it in the tub and swimming, as it's fully waterproof. She can decorate it if she wants, but she prefers to sort of pretend it isn't there. She doesn't want any attention drawn to it. It's just there. (Or "isn't" in her mind). Here's a pic from the my last post "Reality Bites" which I also recommend, as it talks about the scary reality of having a bolter! <a href="http://dancingthroughthetulips.blogspot.com/2014/07/reality-bites.html">http://dancingthroughthetulips.blogspot.com/2014/07/reality-bites.html</a> I will also be looking into adding the PAL system through Project Lifesaver which I believe is a GPS system. It would be nice to have both systems in place in case one doesn't work as well as the other. </div>
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Next in our plan was to work our state Department of Developmental Services and our local school through Chloe's IEP. We have 2 BCBA's on board (Board Certified Behavior Analyst) one from DDS and one from the school district. Together we have created an additional safety plan including the following:</div>
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<li>focus on teaching Chloe the verbal cue "STOP!" This cannot be done with a game because that confuses Chloe who already thinks running off IS a game. It is very serious and when she hears "STOP!" she must learn to STOP immediately without hesitation. We also discussed using a different word, but determined "stop" is the word everyone will know (including strangers) so we want her to respond to anyone's STOP</li>
<li>focus on increasing SAFETY AWARENESS - including but not limited to - stopping at curbs and stop signs; learning full name, address and phone; stopping and listening to adults</li>
<li>the addition of visual cues at home - Chloe likes to read signs so we have a sign by each exterior door with simple instructions and coinciding pictures to give her cues. A large plain "STOP" sign can also be used</li>
<li><img height="200" src="https://fbcdn-sphotos-e-a.akamaihd.net/hphotos-ak-xpa1/v/t1.0-9/10696369_10152737763359528_372050228545159551_n.jpg?oh=1b6f09880712f9de7ae583988a038978&oe=54BE5529&__gda__=1418777155_ecb103e4bcfd1e33cc2ae8b5ba0f6d17" width="150" /></li>
<li>we have installed hooks and latches up out of her reach on all exterior doors</li>
<li>the main exit door has a very loud door chime on it which we can hear throughout the house - we are all VERY cued into it so if we hear it we immediately take a role call and do a status check of Chloe's exact whereabouts</li>
<li>When in public we TRY to use a stroller or monkey backpack, but now that she's 6 she is much more resistant to these things and prefers some independence. We try to double team her, keep her brightly clothed and don't ever let her get more than a step ahead.</li>
<li>On vacations or away from home for extended periods we "assign" Chloe times so we KNOW who is responsible for that time period and make a clear designation if we are to reassign responsibility. That way there is no confusion about who should be watching her. </li>
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I think that covers most everything we've got in place right now. Oh, we have looked into a service dog as well, however with our family already having 2 dogs we think it would be a little too much for us now, however it is never completely ruled out. It's my understanding they can be trained to stay with your child at all times (possibly herd your child home or stay with them until they are found and much more!) Please feel free to leave a comment with questions. Good luck out there to all my fellow escapee parents.<br />
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~AMY</div>
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The Gatekeeper ;)</div>
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<br />Mama Mason-Mannhttp://www.blogger.com/profile/06917976774636808205noreply@blogger.com0tag:blogger.com,1999:blog-602444691023096666.post-92123452105906200982014-07-06T21:02:00.000-04:002014-07-06T21:02:40.708-04:00Reality Bites<div class="separator" style="clear: both; text-align: center;">
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Remember that 1990’s movie about love and relationships? The trials and tribulations of older adolescence. It seems life was so simple then. Not to mention with an awesome
soundtrack! Now, not to say adolescence
is simple, by any means, but I guess compared to the realities of adulthood and
PARENTHOOD, life does seem a bit more. . . complicated now. Where is this all coming from, you might be
wondering. Well, in short, life with
Chloe. That sounds negative and I don’t
mean it that way, so let me explain.</div>
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<a href="https://scontent-b-lga.xx.fbcdn.net/hphotos-xpf1/v/t1.0-9/10377239_10152524359749528_5397456522890927784_n.jpg?oh=2121bf3ab1a002f71048a293d6ee3786&oe=5419C624" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://scontent-b-lga.xx.fbcdn.net/hphotos-xpf1/v/t1.0-9/10377239_10152524359749528_5397456522890927784_n.jpg?oh=2121bf3ab1a002f71048a293d6ee3786&oe=5419C624" width="240" /></a>A few weeks ago, Chloe was outfitted with a new radio
transmitter registered with the local police department as part of the Project Lifesaver program. It’s been in the works for weeks now, probably
more like months, but finally, she is donning her newest accessory – a waterproof
bracelet/anklet worn around her ankle that contains a radio transmitter in the
event she gets lost. That’s where the
reality part comes in. I posted a
picture of Chloe’s new jewelry on Facebook and was showered with “wow’s” and “that’s
great” and “what a relief”. But that
wasn’t the REALITY of it. The reality of
it is that this is just a small tiny Band-Aid on the bigger problem. Chloe is an escape artist. AND a runner.
And Chloe has little to no sense of road safety or water safety. And being outfitted with this new transmitter
not only made me realize the reality of her escaping, but also the realization
of the limitations of what this small device can provide. And that, my friends, is quite daunting. The REALITY is if she gets out she could
die. Period. Before we even have a chance to call the
police to search for her she could be hit by a car on our very busy street or
drown in water she eagerly wants to jump into.
This is our reality and quite frankly, it bites.</div>
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I don’t mean to be such a downer. I like my posts to be upbeat and motivating,
because that’s generally how I feel when I’m thinking of Chloe. But there is another side to that optimistic
side of things. The other day at work I
was telling someone about my three children and as usual I said “and then I
have a 5 year old girl who has Down syndrome”.
For the first time in a LONG time I got a “gasped” response, followed by
“oh no’s” and “I’m so sorry!” “That’s so
awful” and on and on. “No! No!” I
assured her. “We love her! She is true delight! We feel blessed to have her and couldn’t
imagine her any other way” clearly reassuring her it would be okay, as if I
were reassuring a new mother who had just received the news herself. And I did mean EVERY SINGLE WORD OF IT! We can’t imagine our lives without Chloe or
who Chloe would be without Down syndrome.
We embrace her for who she is. We
celebrate her. </div>
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But that doesn’t change the reality that EVERY SINGLE DAY we
live with the added fear that we could lose her. All parents know this feeling. When you experience the love such as that of
a parent for a child you can’t help but fear even the unrealistic. The unreasonable. But for us, that fear is a little more
real. The chances that something
horribly tragic could happen are higher with our special kiddos who run,
misunderstand danger, or who have special medical needs. And some days it gets me. It holds onto me and squeezes me until my
breath is taken. And I gasp, almost as
if there is no air left in the world, only to realize there is. Today is NOT the day we will lose Chloe for
good, and hopefully that day will not come for a very long long long time.</div>
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If you’re wondering how we get up each day and live in this
shroud of fear and doubt. Well, the
answer is because we have to. In order
to give all our kids the lives they deserve we must let some of the realities
of what can be and live in the moment.
The “I want to dance barefoot in the rain” moment that reminds us that
we must LIVE while we can for someday, as with all of us, we will lose that
luxury and when we do we want to be able to say, it was a good life that we
lived afterall.</div>
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Mama Mason-Mannhttp://www.blogger.com/profile/06917976774636808205noreply@blogger.com0tag:blogger.com,1999:blog-602444691023096666.post-90524106473605639672014-03-17T15:12:00.000-04:002014-03-17T15:12:56.186-04:00DREAMS<div class="separator" style="clear: both; text-align: center;">
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<tr><td class="tr-caption" style="text-align: center;">Sadie with a pregnant mommy</td></tr>
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When I was about 19 weeks pregnant, just moments after the
shock wore off from discovering I was having a girl (when I was 99% sure it was
a boy, so much for that mother’s intuition), I learned that our baby would
probably have Down syndrome and for sure would have a significant heart defect. Our initial reaction was of course one of complete
and utter shock. My heart ached and my
eyes filled with tears as we grappled with the thought that our baby might not
even make it to birth. And if she did,
would she survive? Would she be able to
live a healthy, active life or would she be a sickly child we would have to sit
by and watch slowly die. These and many
other thoughts filled our hearts and minds as we held onto each other and
cried. And feared. . . and hoped. </div>
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After my mom escorted my son out of the room, my husband and
I were left alone with our thoughts.
Decisions had to be made. Did we
WANT to know if she had Down syndrome?
Or maybe some other more life threatening disorder. We were already wondering if she was going to
live and Down syndrome was the LEAST of our worries. But we were worried there were other more predominant
issues to deal with and worried there might be something that could put my life
at risk. So after great deliberation we
went with an amnio. . . just so we would “know”.</div>
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We spent the next few days wondering if our baby would survive
to be born. . . live to see subsequent birthdays. At this point we just wanted to hear our baby
would live. The baby we had grown to
love already. We just wanted her to
LIVE. Once we finally got into the see the
cardiac specialists it was clear that our sweet baby WOULD live and likely
thrive, after one, maybe two open heart surgeries. With rough hand drawings and stories of great
strides in medicine our greatest fears of death were alleviated. We were elated. But now we were faced with the reality that
although she would likely live a healthy life, she DID have a significant heart
defect that would require major open heart surgery and she DID have Down
syndrome.</div>
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<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-cw2Ix3H4jAI/UydHpu4B65I/AAAAAAAABeU/uW_Zp_m_cAU/s1600/Amy's+IPhone+016.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-cw2Ix3H4jAI/UydHpu4B65I/AAAAAAAABeU/uW_Zp_m_cAU/s1600/Amy's+IPhone+016.JPG" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Drawing of a "normal heart"</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">A heart with AVSD - Chloe's condition</td></tr>
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My heart once again ACHED as I wondered what all that would
mean. Especially the Down syndrome. What would she be like??? What would she LOOK like??? Would her mouth droop? Would her tongue hang out? Would she talk “right”? Would people stare? Doubts, fears, anxiety all filled my
mind. All the many questions that
swirled through my head overwhelmed me.
I remember feeling as if someone had picked up my house and shook it upside
down and around and around and left me, sitting there alone, in the middle of
it all. </div>
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My dreams for her were gone.
She wouldn’t be “normal” so what could I dream for her anyway. And slowly, ever so slowly, I began to
realize that first off, she would be alive.
That was our first dream. Then it
became ever so evident to me that although she WOULD be different in some ways,
so are all kids. It’s really the fact
that she is so ALIKE a group of people who all have Down syndrome, not that she
is so different. And then came some
serious self reflection. . . what WERE my dreams for my kids anyway? Fame?
Fortune? Great success? Um, those that know me know those aren’t MY
dreams. My dreams are for
happiness. Real, pure happiness in
whatever that means for each individual.
To be a good friend, a good citizen and to care for others. So what about those dreams couldn’t be true
for our new baby who just happens to have Down syndrome and a heart
condition? You got it. . . NOTHING.</div>
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.<img src="http://im1.shutterfly.com/media/47a2d626b3127ccef09ac1306a7800000030O00CZtXLVwzZMge3nwM/cC/f%3D0/ls%3D0300202385950319904804170313670.JPG/ps%3D50/r%3D0/rx%3D550/ry%3D400/" height="232" width="320" /></div>
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Don’t get me wrong.
As I’ve said before this is a process.
A loss, of sorts, that we must grieve.
But once your realize that your child is still YOUR child and will have
incredible dreams of their own, because yes, they are in fact individuals! And the greatest dream we can have is for happiness,
not defined by us, or others, but by the person who experiences it. </div>
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And by the way, yes people stare sometimes, yes her mouth droops and yes, her tongue sticks out, but I think she's beautiful and worth it. Her imperfections make her who she is!</div>
Mama Mason-Mannhttp://www.blogger.com/profile/06917976774636808205noreply@blogger.com1tag:blogger.com,1999:blog-602444691023096666.post-25124451759130718562014-03-14T17:34:00.002-04:002014-03-14T17:35:45.359-04:00Celebrating World Down Syndrome Day 2014<div class="MsoNormal">
First off I HAVE to share this video with everyone who knows
Chloe or knows OF Chloe. It made me cry
and I think it’s amazing!<br />
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So this blog post will be dedicated to Chloe and her biggest
cheerleaders Xander and Sadie, in honor of WDSD which takes place on March 21<sup>st</sup>
every year. Get it???? 3/21. . . . wait
for it. . . Trisomy 21 the official medical
term for Down syndrome. I know, cute
right? Anyway, let’s talk kids. Mine, of course, cause it’s my blog (hee hee). I haven’t done a general update in awhile so
here goes:<br />
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CHLOE has been a busy little beaver. Which in turn means so have the rest of us! But what else is new! I was shocked at my most recent teacher
meeting when she showed me the book Chloe was reading. Yes, I said it R-E-A-D-I-N-G! Not “reading” like I thought, where she
points her fingers at words and talks along in gibberish as she goes, but
actual word recognition reading! wooo
hooooo! Now that’s a milestone I wasn’t
even quite expecting yet. What a
pleasant surprise. She’s also talking in
FULL, sometimes long sentences! Not
always, but every now and then she comes out with a wowzer! Like “Mom, can you stop doing that?!” (probably when I’m singing or dancing). She’s got a new i-Pad that we’ll be using to
help her communicate because although she can speak in full sentences at times,
at other times the words just escape her and frustration bleeds into her sweet
little eyes. Chloe’s also toilet training and has been for
what seems like months! She’s so darn
close. Close, but yet so far. . . Chloe loves to sing and dance with Sadie,
play floor hockey with Xander, watch movies and act them out, play with her
Playmobil people and her cars. She is
full of spunk and zest, but a full on love.
I find if I’m getting frustrated with her if I can get her to laugh, we’ll
all be okay! Lastly, she’s been busy
doing gymnastics (or should I say Max her shadow has been busy chasing her
during gymnastics!) I think that covers
Chloe in a nut shell. Oh, I forgot the
medical update. . . we’re trying to wean her off her thyroid meds and heart
meds and could potentially have her MED FREE by the end of April. I get VERY emotional when I think about this
as it seem like the end of a very medically dominated era. I’ll keep y’all posted.<br />
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AND as if all this isn’t enough, Chloe has taken to RUNNING out
of the house. We’ve gone into lock down,
but mistakes happen and she has gotten out and gone missing, although only
briefly, several times. One time she was
seen bolting out into our busy street without even glancing for cars or
hesitating. We were sooooo
lucky!!!! We will be putting this in the
forefront now that the warm weather is returning and will be working with our
local police department to get her hooked up with Project Lifesaver, a tracking
program for people with disabilities. We’re
also working with the Department of Disability Services and the school to come
up with some behavior plans to help prevent bolting. It’s a very scary prospect!<br />
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SADIE SADIE SADIE.
What can one say about Sadie. The
poor middle child, sandwiched between two very high maintenance siblings. And a drama queen in her own right. Well, she’s been struggling a little with her
place and has expressed the feelings of being left out so we’ve made a real
effort to give her some special extra attention, her school is hooking her up
with a mentor and I’m enrolling her in a program called SibShops, just for
siblings of kids with disabilities. She’s
looking forward to both! She’s also
taking gymnastics with Chloe, doing well in school and growing like a
weed! She LOVES to play school,
experiment, dance and be silly and do “fashion”. I fear the day when we can fit in the same
clothes! Although I guess that means I
get to steal from her closet too ;)
Sadie’s had two bouts of strep but otherwise is healthy. No specialists for her. She is such a great sister to both Chloe and
Xander. <br />
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XANDER MAN! Last but
not least. He’s 13. Yes, 5 years from 18. . . 3 years from being
able to drive. 1 ½ years from high
school. And I know all this because he’s
been sure to point it out to me! He
loves toying with me and reminding me he is growing up! AND UP
AND UP. Every week he likes to point out
how far above my head he’s gotten. Last
count 5’5” and growing. He’s a beanpole
though. 95lbs soaking wet. He’s definitely working to find himself out,
but he, like his other sibs, is a strong part of the family. He’s working VERY hard in school and hockey
and LOVES playing video games. He’s
still interested in medicine (has been since he was 2), but also takes some
interest in the military. He’s a family
guy for sure, heading down to VA to visit his Great Nana who he loves very
much.<br />
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<br /></div>
Stacey and I are doing well.
22 years together and 19 years married.
wowzers! And still going
strong. He’s gearing up for the spring
season at work and I’m about to take on an increased caseload at my job (hence
the early WDSD post). We’re ready for
spring for sure! It’s been a LONG and
stressful winter.Mama Mason-Mannhttp://www.blogger.com/profile/06917976774636808205noreply@blogger.com0tag:blogger.com,1999:blog-602444691023096666.post-88723310021746822942014-02-24T10:17:00.001-05:002014-02-24T10:18:52.655-05:00Life with a Child with Special Needs: One Parent's Perspective<div class="MsoNormal">
I’ve been thinking a lot about what it’s like to be a parent
and particularly a parent of a child with special needs. A friend of mine recently posted on Facebook
about how hard it is and how defeated she felt.
And that got me thinking even more.
My husband hates when I think . . . sorry honey, I’m going to do my best
to put my thoughts and feelings into words on paper. So here goes.</div>
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I’ve been feeling pretty darn good lately about things,
particularly my ability to parent a child, and now 2 children, with special
needs. No, we didn’t adopt, we have just
uncovered some new diagnoses in my eldest.
(See previous post). Anyway, I
have to admit, I was maybe even feeling a little high and mighty. Still overwhelmed for sure, but most
importantly able to fully (or so I thought) “accept” and “embrace” their “special
needs”. But as I’ve delved into my own
psyche a little further, I think in truth, that having a child with special
needs is a daily. . . well, I don’t want to say struggle. . . how about “daily
process”. Yes, that is more
fitting. I personally, at least, THINK
about the fact that my children have special needs daily. But lately, I’ve been quickly able to calm my,
shall we say “doubts”, with thoughts of acceptance. For example, each day when I have to open a
gate so I can go upstairs just because my 5 year old would take off upstairs
and get into great mischief, I think, however briefly, “ugh, if she didn’t have
special needs, Down syndrome specifically, I wouldn’t have to have these damn
gates all over my house”. But then I
quickly catch myself and turn it around and remember that I love Chloe for who
she IS and really wouldn’t want to change her because then she wouldn’t be
Chloe, with all her joys and wonder. I
am able to quickly accept and embrace her.
</div>
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After reading my friend’s post my first reaction was “Oh I
feel so sorry for her, that she’s not where I am.” But the more I thought about it the more I realized
it’s not that she’s not where I am. . . as I am often there too, rather she is
just in one of the many valleys we as parents, and even more so parents of
children with special needs, experience all through our children’s lives. Peaks and valleys. The acceptance and embracing of them is
ALWAYS there, it’s just sometimes harder to access. Sometimes we feel defeated. And that is OK. In fact, it’s more than OK, it’s normal and
healthy and all part of the process. </div>
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I recently revisited some past blogs of my own, particularly
one about admitting I didn’t like Down syndrome and then a follow-up about
being “back on the Ds train”. I think my
own somewhat adverse response to my friend’s post was my own defense against
those hard-to-face feelings that we all experience at one time or another. Those defeating, overwhelming,
what-the-hell-have-I-gotten-myself-into feelings. . .and my words to her may
have seemed trite, but I stand by them. . . “This too shall pass”. Granted, that doesn’t make it any easier when
you’re going through it, but maybe just to offer a glimmer of hope that this
really is just a phase. Not just for the
kids, but for us. Just a valley that
WILL once again lead to a peak. </div>
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<br />
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So in closing, what IS life like as a parent with a child or
children with special needs? Well, it’s
just like that of being a parent of ANY child.
It is just often magnified with greater and longer experiences of those
peaks and valleys. We just have to
remind ourselves that although the lows may be lower, the highs are often
higher! And to meet our children, like
ALL children, where they ARE and NOT where we want them to be. If we can remind ourselves of this, we will
once again be able to see the joys in what they CAN do. . . and not be focused
on what they can’t. But like many things
this is a daily and ongoing process.
Hey, what doesn’t kill us makes us stronger, right?!</div>
Mama Mason-Mannhttp://www.blogger.com/profile/06917976774636808205noreply@blogger.com0tag:blogger.com,1999:blog-602444691023096666.post-13437442133348756602013-06-10T20:38:00.000-04:002013-06-10T20:41:17.893-04:00We've Been Busy<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-EADluFTbBJg/UbXM5dPARAI/AAAAAAAABa0/DY-0y5ndMGA/s1600/IMG_2308c.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="http://1.bp.blogspot.com/-EADluFTbBJg/UbXM5dPARAI/AAAAAAAABa0/DY-0y5ndMGA/s320/IMG_2308c.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Easter 2013 with Nana behind the camera! And Sadie is wearing costume glasses. It's a fashion thing. . .</td></tr>
</tbody></table>
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<span style="font-size: 12.0pt; line-height: 115%;">JFS. CBC.
TSH. T4. PPTs. 504.
IEP. ADHD. IQ. DCIS. Those are just a few of the acronyms that seem
to define our lives lately. What do they
stand for? Work and life, in a nut
shell. <o:p></o:p></span></div>
<br />
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<span style="font-size: 12pt; line-height: 115%;">I’ve been so
busy I could hardly justify sitting and updating the blog AND my Outlook email
isn’t working so I’m unable to send out my bulk email to let everyone know I’ve
finally updated the blog, which I’m just sure no one checks it anymore!</span><span style="font-size: 12pt; line-height: 115%;"> </span><span style="font-size: 12pt; line-height: 115%;">So there are my big excuses for not
blogging.</span><span style="font-size: 12pt; line-height: 115%;"> </span><span style="font-size: 12pt; line-height: 115%;">Unfortunately it isn’t for
lack of things to write about.</span><span style="font-size: 12pt; line-height: 115%;"> </span></div>
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<span style="font-size: 12pt; line-height: 115%;"><br /></span></div>
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<span style="font-size: 12pt; line-height: 115%;">So where to
begin is my big question now . . . I guess we’ll go youngest to oldest.</span><span style="font-size: 12pt; line-height: 115%;"> </span><span style="font-size: 12pt; line-height: 115%;">So let’s talk about Chloe.</span><span style="font-size: 12pt; line-height: 115%;"> </span><span style="font-size: 12pt; line-height: 115%;">Once again, Chloe is being Chloe.</span><span style="font-size: 12pt; line-height: 115%;"> </span><span style="font-size: 12pt; line-height: 115%;">What does that mean?</span><span style="font-size: 12pt; line-height: 115%;"> </span><span style="font-size: 12pt; line-height: 115%;">Well for those of you who follow along you’ll
understand what I mean, but for those of you who are new to the blog let me
explain. . . that basically means she’s giving us drama, but in the end we’re
confident it will all work out.</span><span style="font-size: 12pt; line-height: 115%;"> </span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">First of
all, a little back story. . . back in March Chloe had to increase her thyroid
medication and while getting that lab work also got her annual CBC done which
came back slightly abnormal sending us to Yale Smillow Cancer Hospital for a
Hematology/Oncology consult. For those not
that familiar with Down syndrome, kids with Ds are at higher risk for
developing leukemia than “normal” kiddos, so an abnormal reading calls for a
manual read by a cancer specialist. So
off we went to Smillow where we were ultimately told that she is fine. . .
we’ll do occasional CBC’s if she’s getting stuck for something else so she
doesn’t have to have unnecessary blood draws.<o:p></o:p></span></div>
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<span style="font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">So about 3
weeks ago Chloe collided with another child at school and had a pretty serious
nose bleed. The nurse warned me it might
bleed some more that night. Well, at
home, it was a Friday night, she had two fairly significant bleeds (I’ll spare
you the gory details, and believe me there were some). I called the doc Saturday morning and got
instructions on how to handle the bleeds and when to consider it in need of
further intervention and of course she had no more bleeds. Come Tuesday afternoon I noticed a few drops
on her shirt and some dried blood in her nose.
I wrote a note to the school and low and behold she had a 20 minute nose
bleed on Tuesday and they neglected to notify ME or the NURSE! Oops!
I don’t remember the exact timeline, but she had another big nose bleed
in the middle of the night all over her sheets and a few more medium to big
ones at home, so we took her in to see the ENT.
Didn’t appear broken, and they recommended saline spray and antibiotic
ointment in her nose to help it heal and sure enough that did the trick. Shortly thereafter I started noticing easy
bruising and red spotting type bruises that seem to appear and go away fairly
quickly. Since she was due for her
thyroid screen and they were going to stick her anyway, it seemed appropriate
to get another CBC. So here we are with
another “abnormal” CBC, in fact exactly the same as last time. They’re seeing us to do a manual count again,
which we expect to be fine and then to devise a plan on how to monitor her
going forward, including establishing a new “baseline” for her. We really aren’t too worried. <o:p></o:p></span></div>
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<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-49pf6O_TY_s/UbZvcz9jFCI/AAAAAAAABbM/X3KavKzOhSA/s1600/Amy's+IPhone+047.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://1.bp.blogspot.com/-49pf6O_TY_s/UbZvcz9jFCI/AAAAAAAABbM/X3KavKzOhSA/s320/Amy's+IPhone+047.JPG" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b>***UPDATE***</b>Chloe waiting for her blood draw today at Hematology/Oncology where <b>everything looks GREAT</b>!!!!!!</td></tr>
</tbody></table>
<div class="MsoNormal">
<a href="http://2.bp.blogspot.com/-0occHKmh8RA/UbZv8PmjeYI/AAAAAAAABbU/aH5PwSvGvU0/s1600/Amy's+IPhone+044.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="http://2.bp.blogspot.com/-0occHKmh8RA/UbZv8PmjeYI/AAAAAAAABbU/aH5PwSvGvU0/s200/Amy's+IPhone+044.JPG" width="149" /></a><span style="font-size: 12pt; line-height: 115%;">Since
starting this post I have a new story to add. . . don’t worry, I’ll be
brief.</span><span style="font-size: 12pt; line-height: 115%;"> </span><span style="font-size: 12pt; line-height: 115%;">After returning home from an
awesome Open Playgroup with friends Chloe was headed outside to see her daddy
and was at the top of our wooden deck stairs, when our beastly black lab mix
“puppy” barreled right past her sending her cart wheeling in a dramatic
fashion, all the way down the stairs.</span><span style="font-size: 12pt; line-height: 115%;">
</span><span style="font-size: 12pt; line-height: 115%;">Stacey (her dad) and I watched helplessly.</span><span style="font-size: 12pt; line-height: 115%;"> </span><span style="font-size: 12pt; line-height: 115%;">It was so dramatic my instant reaction was to
just call 911, but after sitting with her for a minute, I realized that was
unnecessary. </span><span style="font-size: 12pt; line-height: 115%;"> </span><span style="font-size: 12pt; line-height: 115%;">About 20 minutes later an
atypical midday nap warranted a call to the doc, but we determined she was
fine.</span><span style="font-size: 12pt; line-height: 115%;"> </span><span style="font-size: 12pt; line-height: 115%;">So aside from my bumps, bruises
and scrapes, she came out of it ok.</span><span style="font-size: 12pt; line-height: 115%;">
</span><span style="font-size: 12pt; line-height: 115%;">sigh.</span></div>
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<span style="font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">Sadie’s our
“stable” one (ha ha – that says a lot about our family. . . tee hee). Aside from a badly bruised ear and a swollen
cheek bone (two separate incidents), she’s been keeping me somewhat sane. Don’t get me wrong, she has her moments, like
everyone, but for the most part she’s in a REALLY good place. (knock on wood). She’s into fashion and playing with friends
and listening to music. . . and that about sums her up.<o:p></o:p></span></div>
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<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-5uhwXgZFATo/UbXDdWc_r1I/AAAAAAAABac/8SXlLVszyHk/s1600/IMG_0323.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://2.bp.blogspot.com/-5uhwXgZFATo/UbXDdWc_r1I/AAAAAAAABac/8SXlLVszyHk/s320/IMG_0323.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Before Xander's band concert - he plays drums!</td></tr>
</tbody></table>
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<span style="font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">Then there’s
Xander. Xander is a very long story,
which because of his age, I will avoid the in-depth details. Falling grades, psycho-education assessments,
and doctor appointments have led to the understanding that Xander is VERY
bright, YET has an extremely discrepant Processing Speed. There is some dispute as to whether he has a
learning disability (between our pedi and his therapist who both feel strongly
that he does and the school who does not) so we are left fighting to help
Xander be understood better and to get him the services he so desperately
needs. Aside from school Xander is
playing spring hockey and enjoys video games and hangin’ with friends.</span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;"> <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">Stacey and I
are busy busy busy. Between work and
spring duties, and getting the kids to their many appointments and coordinating
and advocating we are just trying to get through. Stacey and I survived another spring work
season, meaning he’s back to working 5-days a week instead of 6. This leaves us with a whole extra day to get
things done. WOW. I’m stressing with all
the work I’m doing and trying to coordinate the care for my kids, but I do LOVE
my job and find solace in having something that is my own outside the home,
that I feel passionate about. I am lucky
to have found such a perfect fit for me.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;"><br /></span></div>
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<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-e53ORAfypDE/UbZxQTlkDhI/AAAAAAAABbo/1PhGDMJrvUA/s1600/Amy's+IPhone+092.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://4.bp.blogspot.com/-e53ORAfypDE/UbZxQTlkDhI/AAAAAAAABbo/1PhGDMJrvUA/s320/Amy's+IPhone+092.JPG" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Nana and Xander after hockey.</td></tr>
</tbody></table>
<div class="MsoNormal">
<span style="font-size: 12pt; line-height: 115%;">Last but
certainly not least is my mom.</span><span style="font-size: 12pt; line-height: 115%;"> </span><span style="font-size: 12pt; line-height: 115%;">She’s
doing really well, considering she was diagnosed with Ductal Carcinoma In Situ
(AKA -</span><span style="font-size: 12pt; line-height: 115%;"> </span><span style="font-size: 12pt; line-height: 115%;">DCIS) which is a VERY treatable,
non-spreadable form of breast cancer.</span><span style="font-size: 12pt; line-height: 115%;">
</span><span style="font-size: 12pt; line-height: 115%;">She has had the offending calcifications and lesion removed and will
undergo 6 weeks of radiation and then a possible follow-up treatment
afterwards, but that should be it.</span><span style="font-size: 12pt; line-height: 115%;"> </span><span style="font-size: 12pt; line-height: 115%;">No
chemo and we expect a full recovery.</span><span style="font-size: 12pt; line-height: 115%;"> </span></div>
<br />
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">So I think
that covers everyone – for the most part anyway. This is what happens when I don’t update for
awhile. So much to say. . . will update
after our Hem/Oc appointment. . .<o:p></o:p></span></div>
Mama Mason-Mannhttp://www.blogger.com/profile/06917976774636808205noreply@blogger.com0tag:blogger.com,1999:blog-602444691023096666.post-66260371480965049202013-01-11T20:44:00.000-05:002013-01-11T20:44:57.230-05:00No Words<br />
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I have been at a loss for words since the Newtown
shootings. What is there to say,
really? I mean life goes on. . . well
for the rest of it. . . it has to. But I’ve
found it difficult to sit down and write about everyday life when such a
tremendous national tragedy has taken place.
My heart is heavy, if not full out broken, but it is time to write
again. It is time to live and appreciate
life, again. So I will find the words
today, not about the tragedy, because really there are none, but I will return
to updating on our goings on.</div>
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<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-pZhbiTTyXDg/UPAh0b6GXSI/AAAAAAAABYY/vdQMj-dwMT4/s1600/IMG_1787.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="http://2.bp.blogspot.com/-pZhbiTTyXDg/UPAh0b6GXSI/AAAAAAAABYY/vdQMj-dwMT4/s320/IMG_1787.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Christmas Eve we burned candles in the shape of N.T. to honor and remember those that lost their lives in the tragedy.</td></tr>
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<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-Nr19tfkXWF0/UPAjhr5VOgI/AAAAAAAABZE/8itKLzhOT7I/s1600/IMG_1818.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="213" src="http://4.bp.blogspot.com/-Nr19tfkXWF0/UPAjhr5VOgI/AAAAAAAABZE/8itKLzhOT7I/s320/IMG_1818.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Caught in the act!</td></tr>
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Where to begin. I
guess with Chloe. Where else (ha
ha). Anyway, she’s still that bright
light that shines in my life, bringing me joy in ways I never expected. Don’t get me wrong. . .she’s still the same
challenge as always. . . climbing on tables, writing on walls and chairs,
getting into EVERYTHING, but after a recent week with Chloe’s younger
2-year-old cousin, I was able to realize how far she’s come. I’ve often thought of her at 4 as much like a
2-year-old, but after spending a whole week with a 2 year old, she really isn’t. She isn’t really a 4-year-old either. She’s just CHLOE. And for now, I’m rejoicing in that. Her latest thing? Running around laughing hysterically. I mean, how could you resist that? Her “personality” is as strong as ever, but
she seems to be happier with each passing day.
I’m not sure I thought that was possible. Of course she is still stubborn and has her
OWN opinion about how things are going to go (like the routine at school – she thinks
SHE’S in charge! haa haa), but there is
this joy about her lately. A laugh that
cannot be resisted. A smile that
brightens even the darkest of days. </div>
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<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-wyNur9uVESE/UPAl4MTlH8I/AAAAAAAABZc/Vfz7b6OrECs/s1600/IMG_1938.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="http://3.bp.blogspot.com/-wyNur9uVESE/UPAl4MTlH8I/AAAAAAAABZc/Vfz7b6OrECs/s320/IMG_1938.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">There's that smile!</td></tr>
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What else is going on with her, you wonder? Well, we got new glasses. They fit MUCH better but are a little less
sturdy. Specs 4 Us – made just for
kiddos with Ds. She looks stinkin’
adorable in them, if you ask me, BUT that doesn’t make her any more motivated
to wear them. At least with this pair
however, she does fold them neatly up and puts them down instead of heave-hoeing
them across the room. Ah the small
accomplishments.</div>
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The other kids are good.
Busy as usual. Xander is turning
12 – the magical “I can sit in the front seat now 12!” He feels like a big kid already. He’s still busy with hockey and struggling in
school, but we’re working on that.
Generally he’s doing well and in good spirits when he’s home. And Sadie.
What to say about Sadie. She’s
still all girl. Quickly lost interest in
soccer. We’re going to try lacrosse
next. She’s got a busy elaborate
imagination that keeps her occupied for hours.
She’s doing GREAT in school both academically and socially. She’s found a good fit so far with her teachers.</div>
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<tr><td class="tr-caption" style="text-align: center;">Chloe giving mommy and daddy hugs!</td></tr>
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Stac and I are great.
We had a WONDERFUL holiday break surrounded by family. It was truly a special time. As much as my sister thought we’d be relieved
to “have our house back” it just isn’t the same without them here! </div>
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For someone who had “no words” I’ve run my mouth pretty
well. I have another post brewing, but I’ll
save that for another day. Hope everyone
is well and that you’re all finding time to enjoy and appreciate each
other. Happy New Year to all.</div>
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Amy</div>
Mama Mason-Mannhttp://www.blogger.com/profile/06917976774636808205noreply@blogger.com0tag:blogger.com,1999:blog-602444691023096666.post-18188492083738113232012-11-30T09:54:00.001-05:002012-11-30T09:58:51.856-05:00Thanksgiving Post<br />
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Well, it’s sort of a Thanksgiving post. I’m not going to go through all the things
I’m thankful for because that list would be endless. Instead I’ll just update on the goings on in
the ol’ household. </div>
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As always I’m impressed by Chloe’s strength. Although she is currently lying on the couch
with a stomach bug, I know she will fight this off like any other healthy kid
would (in such sharp contrast to her first few years!) I can’t say it enough, I am just amazed at
how far she’s come! UPDATE: she was up
and off the couch in a matter of hours as if NOTHING had happened!!!!)</div>
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Chloe was recently “diagnosed” with dysarthria of speech (basically low muscle tone of her
speech mechanisms, including her tongue and face) and secondary apraxia of
speech which is a motor planning problem.
Because of her need for intensive speech therapies, her school has
increased her to full days. It’s
surprisingly hard to send my “baby” off to full days, particularly since she’s
having a little tough time with the adjustment, but I think once she settles
in, it will be the right choice. </div>
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The glasses continue to be a bit of a challenge, although
she is wearing them for longer periods of time.
I still think I want to get her a different pair. . .
just have to figure out how and when to get that accomplished. In due time ;)</div>
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And then there’s Sadie.
Still having occasional hives.
Saw the doc and he sent us for blood work, which she was VERY BRAVE for,
but we’re still waiting for the results.
Hopefully soon. It’s been awhile,
so obviously they’re all negative, because no news is good news when it comes
to lab work. Doc said we will likely
never know what’s causing them and it could take months for them to go away,
but they should. . . eventually. UPDATE:
all labs were normal <span style="font-family: Wingdings; mso-ascii-font-family: Calibri; mso-ascii-theme-font: minor-latin; mso-char-type: symbol; mso-hansi-font-family: Calibri; mso-hansi-theme-font: minor-latin; mso-symbol-font-family: Wingdings;">J</span></div>
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As for Xander, his 11 viles of blood work basically came
back all good except for one test for his thyroid, which MIGHT indicate that he
has hypothyroidism. Now another test
came back normal, contradicting the other test, and indicating the need for
further investigation (and yes, you got it, more blood work). I’m again waiting to talk to the pedi before
telling Xander the results. I have my
fingers and toes crossed that this is our answer and that a simple thyroid
replacement hormone pill would help “fix” him.
It DOES really fit his symptoms, so I’m hoping there might be a light at
the end of the tunnel. </div>
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And as if things weren’t interesting enough, our poor
poocher is itchy all over and just can’t seem to get relief. We’ve been trying non-soap baths, and Zyrtec,
but I just don’t think he’s getting enough relief. I think it might be time to get his thyroid
checked too (he’s overweight, always cold, lies around and isn’t as active as
his breed typically is and he itches).
Can you imagine if he’s got an underactive thyroid too!!! LOL We seem like a big mess, don’t we.</div>
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Stacey and I are hangin’ strong. I’m going to get my thyroid checked soon too
because I’ve had symptoms again. Hoping
that’s my quick easy answer. Stacey,
KNOCK ON WOOD, has been healthy! And mom
is doing well too – helping to keep us all held together!</div>
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so, in end, Thanksgiving is a time when we realized despite
these little hiccups in our lives we truly have sooooo much to be thankful
for! And I truly mean sooooooo
much! We were a little sad without our
old traditional large extended family thanksgiving dinner, but made the most of
our “new normal” with just ourselves.
The kids helped cook and we just enjoyed a day of our family. Sometimes it’s important to do that. I hope you and yours had a nice holiday and
find yourselves with some sort of peace.
As the craziness of the season takes over, let’s all not forget all
those wonderful things we DO have to be thankful for!</div>
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Peace out.</div>
Mama Mason-Mannhttp://www.blogger.com/profile/06917976774636808205noreply@blogger.com0tag:blogger.com,1999:blog-602444691023096666.post-20921981901111107872012-11-08T17:53:00.000-05:002012-11-08T17:53:00.514-05:00It's Been Awhile<br />
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Wooofta. It’s so hard
to find the time to post! So MUCH is going on.
Where to begin. . . I guess we should start with Chloe, since believe it
or not, she’s the most “stable” one right now.
She was prescribed glasses a few weeks ago and that’s kinda of a joke,
because she cries if she even sees you holding them in her hand. (Writing that reminded me I needed to go try
to put them on her. . . which I did and she DIDN’T cry and even put them on
herself and played with them on for a WHOLE MINUTE! Wow.)
I think we’re going to try some different styles, because the plastic
ones with the strap are NOT doing it for her and quite frankly, the strap is
worthless because if anything, it just annoys her and doesn’t do anything to
keep them on when she wants them off!
They also sit right against her eye lashes and that seems
uncomfortable. So we’re going to head
back to the optical center and try some different frames. I know people talk about Specs 4 Us. ANY glasses feedback would be welcomed. UPDATE: we found out she IS wearing them
fairly consistently at school. But the
teachers liked the idea of glasses without an annoying strap. ;)</div>
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Chloe’s got her PPT today.
She had a speech eval done outside of school and was diagnosed with
dysarthria of speech as well as a secondary diagnosis of Childhood Apraxia of
Speech. We’ll see what if anything the
school will do with her. I know they’ve
already made some adjustments, but today will make it all official. We shall see. UPDATE:
So they’ve increased her speech dramatically – basically 2.5 hours
delivered by the speech pathologist and an additional 2 hours delivered by a
para. That’s a LOT of therapy, and
pull-out so we’re increasing her to full days.
This is what I wanted, but once it became official I got that “my-girl-is-growing-up”
pang. FULL DAYS. Hope I can handle it. LOL We felt very good about the PPT. In addition, they will be doing a bunch of
standardized assessments as well as observations to get a good baseline of
Chloe. That was one of our major
requests. So we basically got everything
we had hoped for. We feel so lucky to
have a team so dedicated to Chloe and her best interests!</div>
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Sadie with her newly pierced ears!</div>
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Sadie, the 7 year old, has been having hives for a month
now. They started at the end of an
amoxicillin treatment, but just don’t seem to go away. We’re giving it to the end of this week
before we investigate further. She’s
pretty much okay as long as she’s on Claritin, but off she breaks out in these
terribly itchy hives. But at least they
are managed on Claritin, so she’s not suffering! Other than that, Sadie is doing well. She was selected to be a peer star to help
other kids at school. She just LOVES
school and learning and has been a generally happy kid lately. (knock on
wood). She just finished soccer, which
she loved. It was nice for her to have
an activity all her own (as opposed to just following Xander around to hockey!)</div>
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And then there’s Xander.
Without getting into too many details, as he is 11 and I don’t want to
embarrass him!, but he’s been really struggling lately. HATES school and is really having a hard time
there. He’s also having some health
issues – achy muscles, fatigue and low stamina.
It’s been going on for MONTHS. So
we’ve started the thorough investigation to see if there is some underlying
illness/disease/syndrome going on. He’s
been to a rheumatologist at Yale and had 11 viles of blood drawn. The examination itself was good and in fact
he was found to have extra loose joints which could be the cause of the
aching. We also saw the eye doc
yesterday and he has the eye sight of “fighter pilot”! (that’s a good thing). They were checking for inflammation of the
eye that could happen with some autoimmune disease, and he checked out
fine. So, so far so good. I just hope we find some answers. We have to wait 16 days from the time of the
blood draw for results. In the meantime
I’m going to investigate Sensory Processing Disorder because he demonstrated
characteristics of that when he was younger and that may really be affecting
his school work. I also think he needs a
sleep study as his sleep is terrible.
Hopefully eventually we’ll get to the bottom of what ails him!</div>
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Xander wearing reading glasses while his eyes were dilated.</div>
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On top of all this, Stacey and I are busy working. I feel like I’ve got a lot of balls in the
air. Just trying to keep them from
dropping! Oh, and for those of you
wondering how we faired with Hurricane Sandy, we feel VERY lucky. It wasn’t without drama, involving a near
middle-of-the-storm evacuation with a sleeping Chloe, dry-heaving Sadie (she
was terrified) and anxious Xander. . . we lost some roof tiles, a large limb
fell on and broke a bench, and we had our outdoor glass table shatter all over
our lawn. We also lost power for about
24 hours, but a newly purchased generator kept us from losing all our
food. So all-in-all we are grateful for
our own personal outcome. Our hearts and
thoughts are with those who were not so lucky.
And as if that weren’t enough, we had a fluke Nor’easter that dropped
quite a bit more snow then they had predicted!
But we’re New Englanders and we’ll take it as it comes. . .</div>
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The Simpsons came for a visit this Halloween</div>
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Last but not least, let’s not forget Miles. (yes, Miles the dog, ha ha). He’s been plagued with allergies, poor thing,
so we’re trying to take care of him too.
I swear, never a dull moment around her.
</div>
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Sadie and Miles!</div>
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<br /></div>
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On a VERY positive note, Stacey’s mom, AKA Grandma Linda, is
here visiting for the next 11 days. We’re
so excited to have her here with us! We
don’t get to see her near enough, so it’s so special when she comes. Hopefully the weather will remain quiet from
here on out!</div>
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Happy to have Grandma Linda here!!!!</div>
Mama Mason-Mannhttp://www.blogger.com/profile/06917976774636808205noreply@blogger.com0tag:blogger.com,1999:blog-602444691023096666.post-5468725640001510042012-10-14T11:08:00.000-04:002012-10-14T11:08:51.270-04:00Back on the Train<span style="font-family: Calibri;">I don’t know what changed my emotional direction, but I’m back
on the Down syndrome train!<span style="mso-spacerun: yes;"> </span>I knew as
with all things “this too shall pass” and that it was just a phase, but when
you’re in the midst of it, you wonder how long it’ll be before you’re back to
celebrating the joys and even embracing the challenges.<span style="mso-spacerun: yes;"> </span>I’m back to that point.<span style="mso-spacerun: yes;"> </span>Phew!<span style="mso-spacerun: yes;">
</span>As normal as I know it is to feel frustration and disappointment at
times, that doesn’t make it any easier.<span style="mso-spacerun: yes;">
</span>For one, no one likes feeling that way in general, but then to feel that
way about your own child, leaves you with this overwhelming guilt.<span style="mso-spacerun: yes;"> </span>But I’m in a good place again and feeling
good about my little amazing wonder, and watching her grow and develop and
reach those oh-so-hard-to-reach milestones.<span style="mso-spacerun: yes;">
</span>I’m back to celebrating.<span style="mso-spacerun: yes;"> </span></span><br />
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<span style="font-family: Calibri;"><span style="mso-spacerun: yes;"></span></span><br />
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<span style="font-family: Calibri;">I had an interesting interaction recently.<span style="mso-spacerun: yes;"> </span>I sat and talked with a woman who wanted to
know how “bad” was Chloe’s Down syndrome (i.e., how high or low functioning she
is).<span style="mso-spacerun: yes;"> </span>She also talked to me about her “retarded
Uncle, not Down syndrome retarded, but regular retarded” (yes, those were her
exact words).<span style="mso-spacerun: yes;"> </span>I know I probably should
have used that as a teaching moment about political correct terminology, but I
instead just focused on trying to educate her on how wonderfully lucky and
blessed we were to have such a wonderful child.<span style="mso-spacerun: yes;">
</span>But I also made it clear she’s not some stereotype of what people think
Down syndrome is.<span style="mso-spacerun: yes;"> </span>She’s an individual
with individual likes, desires, dislikes. . . she’s happy and charming, but
also a real live pain in the ass.<span style="mso-spacerun: yes;"> </span>She
brightens our LIVES, but also challenges us like any other child.<span style="mso-spacerun: yes;"> </span>As EVERYONE who has a child with Ds knows,
she’s more alike than different.<span style="mso-spacerun: yes;"> </span>So I
may not have “schooled” her on the correct terminology, but I think I did
educate her a little on life with a very special girl who just happens to have
Down syndrome.</span></div>
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<span style="font-family: Calibri;">As always, thanks for reading and sharing with us as we
navigate our way through this amazing journey!</span></div>
Mama Mason-Mannhttp://www.blogger.com/profile/06917976774636808205noreply@blogger.com2tag:blogger.com,1999:blog-602444691023096666.post-45576173555108164522012-09-15T15:53:00.000-04:002012-09-15T15:53:02.462-04:00A Long Time Coming<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-k30Gea4dRTE/UFTVeKQAwgI/AAAAAAAABTI/RQQVfQvxMjE/s1600/IMG_1161.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="http://2.bp.blogspot.com/-k30Gea4dRTE/UFTVeKQAwgI/AAAAAAAABTI/RQQVfQvxMjE/s320/IMG_1161.JPG" width="320" /></a></div>
<br />
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This post, that is, has been a LONG TIME coming.<span style="mso-spacerun: yes;"> </span>I originally wrote it back in July, but have
had a difficult time posting it.<span style="mso-spacerun: yes;"> </span>Not
only because I don’t know how it’ll be received, but also because it’s a hard
thing for me to admit to myself and deal with. . . accept, and move on.<span style="mso-spacerun: yes;"> </span>But as I’ve sat on this post for months now,
I finally think (THINK) now is the time.<span style="mso-spacerun: yes;">
</span>Please know too, that part of my struggle with posting this lies in the
perceptions that we want to convey to expectant and new parents who are truly
blessed with a child with Down syndrome.<span style="mso-spacerun: yes;">
</span>I don’t want to deter ANYONE from making that choice for life or from
feeling they can’t do it, because I believe in my heart EVERYONE has the
capability to love and raise a child with special needs if they just allow
themselves to be open to a new and (mostly) wonderful world. <span style="mso-spacerun: yes;"> </span>But at risk of, well, pissing some people off,
I am posting this because 1) it is honest and I feel that is important for my
readers and Chloe’s followers and 2) I think it’s OK to say it ISN’T wonderful
ALL THE TIME.<span style="mso-spacerun: yes;"> </span>There are struggles.<span style="mso-spacerun: yes;"> </span>We would all be lying if we didn’t agree to
that.<span style="mso-spacerun: yes;"> </span>But in our experience, the lows
can be real low, but the highs are what we LIVE FOR.<span style="mso-spacerun: yes;"> </span>Because they’re amazing (the HIGHS).<span style="mso-spacerun: yes;"> </span>Watching Chloe accomplish what should be the simplest
task. . . hearing her laugh at her sister and brother. . . hearing her say her
name for the first time, or Mama for that matter. . . seeing her touch the
hearts of people who didn’t think they themselves could be touched. . . I could
go on and on about the HIGHS and fortunately, the lows are much less
frequent.<span style="mso-spacerun: yes;"> </span>But they ARE present and this
is one of those times, still sprinkled in with the highs, therefore preserving
my sanity!<span style="mso-spacerun: yes;"> </span>Anyway, here it goes:</div>
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<br /></div>
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TABOO - originally written July 28, 2012<br />
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<br />
No, not the game, but what I’m going to say.<span style="mso-spacerun: yes;"> </span>I don’t ALWAYS LOVE Down syndrome.<span style="mso-spacerun: yes;"> </span>To tell you the truth, this has come as a
surprise to me.<span style="mso-spacerun: yes;"> </span>I THOUGHT I did.<span style="mso-spacerun: yes;"> </span>I mean, don’t get me wrong, I embrace it and
LOVE LOVE LOVE Chloe for who she is, but I guess as she gets a little older
(but doesn’t seem any older in some behaviors) I start to get frustrated.<span style="mso-spacerun: yes;"> </span>And I guess instead of getting frustrated at
Chloe, I get frustrated at Down syndrome.<span style="mso-spacerun: yes;">
</span>I mean I can’t NOT like her. . . or maybe I can.<span style="mso-spacerun: yes;"> </span>. . but instead of that, I don’t like the
Ds.<span style="mso-spacerun: yes;"> </span>Does this make sense?<span style="mso-spacerun: yes;"> </span>Anyone????<span style="mso-spacerun: yes;"> </span><br />
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<span style="mso-spacerun: yes;"><br /></span></div>
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<span style="mso-spacerun: yes;"><br /></span></div>
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<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dy4L2wBcTQgE0orJ3k7iaRBPRyIpMevuCrygdsjcB-HpB6GOOUiOQRwVV8V-ITAY84XiDkt9iFUGoYmQM9x' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>
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<span style="mso-spacerun: yes;"><br /></span></div>
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Maybe I should be more specific.<span style="mso-spacerun: yes;"> </span>Lately (HA! “lately” means for over a year
now!) Chloe has been climbing on EVERYTHING.<span style="mso-spacerun: yes;">
</span>And the older she gets the harder it gets, because she doesn’t stop
doing the behavior, like “typical” kids would, she just gets better at it.<span style="mso-spacerun: yes;"> </span>Now she can push the chairs where she wants
them or reach things she couldn’t reach before and she’s smarter!<span style="mso-spacerun: yes;"> </span>Outsmarting me most of the time.<span style="mso-spacerun: yes;"> </span>I don’t know why I feel the need to keep
saying it, but I LOVE Chloe (I mean, of course I do!!!!<span style="mso-spacerun: yes;"> </span>She’s my child and just because she has a
disability doesn’t mean I love her any less.<span style="mso-spacerun: yes;">
</span>In fact if you asked my other kids they’d swear I love her MORE, which
obviously isn’t true either. ) and it’s hard to admit that this is HARD.<span style="mso-spacerun: yes;"> </span>It’s hard having a kid with
disabilities.<span style="mso-spacerun: yes;"> </span>I guess I’m afraid to say
that to scare off anyone with a sweet baby or someone who doesn’t have a child
with a disability because one thing I try to convey MOST of the time is the
extreme joy and love that we do experience.<span style="mso-spacerun: yes;">
</span>Even when things are hard, it’s usually (USUALLY) still filled with this
sort of magic that only people who KNOW someone with a disability can
understand.<span style="mso-spacerun: yes;"> </span>But I also have to tell the
truth and it isn’t ALWAYS magic.<span style="mso-spacerun: yes;"> </span>It
isn’t always laughter and smiles and triumph.<span style="mso-spacerun: yes;">
</span></div>
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<span style="mso-spacerun: yes;"><br /></span></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-KrmJA64y1ck/UFTZpV9gD6I/AAAAAAAABTs/8BpoDzZa_go/s1600/Amy's+IPhone+031.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="http://3.bp.blogspot.com/-KrmJA64y1ck/UFTZpV9gD6I/AAAAAAAABTs/8BpoDzZa_go/s200/Amy's+IPhone+031.JPG" width="149" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The chunk of wood Chloe bit off the deck</td></tr>
</tbody></table>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-n4yGD2vVZZE/UFTW-phgYaI/AAAAAAAABTc/apwZSG5VB0I/s1600/Amy's+IPhone+011.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="http://4.bp.blogspot.com/-n4yGD2vVZZE/UFTW-phgYaI/AAAAAAAABTc/apwZSG5VB0I/s200/Amy's+IPhone+011.JPG" width="149" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Chloe's artwork</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-vcut-ztcx-s/UFTY-182rgI/AAAAAAAABTk/61wv9Q9za2M/s1600/Amy's+IPhone+021.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="http://1.bp.blogspot.com/-vcut-ztcx-s/UFTY-182rgI/AAAAAAAABTk/61wv9Q9za2M/s200/Amy's+IPhone+021.JPG" width="149" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Notice the toothbrush on the toilet!</td></tr>
</tbody></table>
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I want her to STOP trying to do somersaults on the porch
table.<span style="mso-spacerun: yes;"> </span>I want her to STOP throwing ALL
her meals on the floor so that at almost 4 years old I’m to the point of having
to hand-feed her again.<span style="mso-spacerun: yes;"> </span>I want her to
STOP getting things off the counter just so she can dump them on the
floor.<span style="mso-spacerun: yes;"> </span>I want her to STOP writing on
every surface she knows she’s not supposed to every time she gets anywhere near
a writing utensil (I swear it’s like she has Jedi powers and can mind-meld pens
and pencils off the counter and into her hot little hands)!<span style="mso-spacerun: yes;"> </span>I want her to STOP getting into EVERYTHING –
the toilets, the dog water bowl, you name it. . .<span style="mso-spacerun: yes;"> </span>I want her to STOP figuring out how to escape
from the house so that I have to have her in my sights at all times or I have
to panic wondering where she’s off to.<span style="mso-spacerun: yes;"> </span>I
just want her to STOP doing these things.<span style="mso-spacerun: yes;">
</span>NOT stop being Chloe.<span style="mso-spacerun: yes;"> </span>But then
there’s always that question I ask myself, if she wasn’t doing all those
things, would she BE CHLOE?<span style="mso-spacerun: yes;"> </span>Would she
still have all those other wonderful characteristics that make her so
incredibly special that people follow her story and her life and see the magic
in her without even meeting her?<span style="mso-spacerun: yes;"> </span>How can
I possibly HATE or even DISLIKE Down syndrome without feeling the same way
about Chloe?<span style="mso-spacerun: yes;"> </span>I mean I know SHE’S not
“Down syndrome”, but it is so much a part of her.<span style="mso-spacerun: yes;"> </span>It’s in every gene for goodness sakes.<span style="mso-spacerun: yes;"> </span>And then, I spend the day at my favorite event
of the entire year, the CT Down syndrome picnic, an event that obviously
encompasses everything Down syndrome is about – a celebration of ALL its joys
and wonders.<span style="mso-spacerun: yes;"> </span>And most importantly the
“family” that we feel so lucky to be a part of.<span style="mso-spacerun: yes;">
</span></div>
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I don’t know where this is headed.<span style="mso-spacerun: yes;"> </span>I guess I just needed to get off my chest
that sometimes I don’t love Down syndrome.<span style="mso-spacerun: yes;">
</span>I always LOVE Chloe, obviously and I love the life we are getting to
experience with her.<span style="mso-spacerun: yes;"> </span>I guess it’s like I
say as kids get older the hard gets harder, but the easy gets easier.<span style="mso-spacerun: yes;"> </span>Having Chloe I’ve found, and I am only
speaking for myself here, that having a child with a disability the hard is
HARD, but the rewards are AMAZING.<span style="mso-spacerun: yes;"> </span>And I
couldn’t do the HARD without all the support of Chloe’s Crew. . . our “village”
that keeps me going.</div>
</div>
Mama Mason-Mannhttp://www.blogger.com/profile/06917976774636808205noreply@blogger.com4tag:blogger.com,1999:blog-602444691023096666.post-34686394646408104852012-08-13T10:06:00.002-04:002012-08-13T10:06:41.320-04:00The Birthday Post<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-uyrz1Pzppsk/UCkHwK9TTCI/AAAAAAAABSc/JPumxaP2e8o/s1600/IMG_0903c.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://2.bp.blogspot.com/-uyrz1Pzppsk/UCkHwK9TTCI/AAAAAAAABSc/JPumxaP2e8o/s320/IMG_0903c.jpg" width="214" /></a></div>
<br />
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<span class="apple-style-span">What can I say on this special day to bring true meaning to it? How can I express the joy of being able to celebrate this and each birthday with Chloe? It was a rough start. Times we doubted her future. Now WHAT it would be, but THAT it would be. So when each birthday comes I find myself highly
emotional.<span style="mso-spacerun: yes;"> </span>Almost giddy at times, at the
sheer thought of her presence.<span style="mso-spacerun: yes;"> </span>And as
she reaches each annual milestone, not only is she a year older and further
along, but she’s a year STRONGER.<span style="mso-spacerun: yes;"> </span>And
this girl has more zest than anyone I know.<span style="mso-spacerun: yes;">
</span>And talk about personality!<span style="mso-spacerun: yes;"> </span>I
think anyone who is blessed to know someone with Down syndrome knows a little
something about their strong-willed vibrant personalities.<span style="mso-spacerun: yes;"> </span>(Clearly NOT to say people with Ds are all
alike, quite the contrary, but they do have some very special traits that they
share, I just happen to think their sparkling personalities is one of
them!)<span style="mso-spacerun: yes;"> </span>I don’t want to go on and on
about how great I think Chloe is. . . obviously, I’m her mom!<span style="mso-spacerun: yes;"> </span>And those of you that follow this blog most
likely agree and love her too.<span style="mso-spacerun: yes;"> </span>I just
wanted to give a little insight into the wonders of this day that rolls around
once a year.<span style="mso-spacerun: yes;"> </span>A reminder, if you will,
not only of what she has overcome, but what she holds in her grasps for the
future.<span style="mso-spacerun: yes;"> </span>I have NO DOUBT whoever she
becomes I will be amazed time and time again along the way and I HOPE you’ll
continue to enjoy this journey with us.</span><br />
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<span class="apple-style-span"><br /></span>
<div class="MsoNormal" style="text-align: justify;">
<span class="apple-style-span"><span style="color: black; font-size: 13.5pt; line-height: 115%;">Happy 4<sup>th</sup> Birthday Ms. Chloe!<o:p></o:p></span></span></div>
<div class="MsoNormal" style="text-align: justify;">
<span class="apple-style-span"><span style="color: black; font-size: 13.5pt; line-height: 115%;">Love, your family and friends!</span></span></div>
Mama Mason-Mannhttp://www.blogger.com/profile/06917976774636808205noreply@blogger.com0tag:blogger.com,1999:blog-602444691023096666.post-27291555902645635632012-07-05T11:50:00.000-04:002012-07-05T11:50:09.908-04:00A Wish Come True<br />
<div class="MsoNormal">
Chloe was granted a VERY special wish.<span style="mso-spacerun: yes;"> </span>A playscape to call her own that she could
use independently and that would grow with her as she grows.<span style="mso-spacerun: yes;"> </span>Thanks to the wonderful and generous
contribution through her Nana’s employers’ “Self Improvement Fund” at
LeClairRyan and the obviously thoughtful gift from Chloe’s Nana to use her fund
in this way, Chloe and her siblings now have an adaptable playscape.<span style="mso-spacerun: yes;"> </span>They LOVE it so much and can’t wait to share
it with their friends.<span style="mso-spacerun: yes;"> </span>Enjoy our journey
in pictures below:</div>
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<a href="http://2.bp.blogspot.com/-8Y-XGGlyxtA/T_WuBcI4kxI/AAAAAAAABQc/F2eM9EO-VYA/s1600/IMG_0765.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="http://2.bp.blogspot.com/-8Y-XGGlyxtA/T_WuBcI4kxI/AAAAAAAABQc/F2eM9EO-VYA/s320/IMG_0765.JPG" width="320" /></a></div>
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Step 1: Reading directions!!!!! (And we're talking books and books of directions!)</div>
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<a href="http://2.bp.blogspot.com/-QZQTRQ3_npk/T_WubbVOigI/AAAAAAAABQo/tnwMP68TKsY/s1600/IMG_0766.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="http://2.bp.blogspot.com/-QZQTRQ3_npk/T_WubbVOigI/AAAAAAAABQo/tnwMP68TKsY/s320/IMG_0766.JPG" width="320" /></a></div>
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The BEFORE shot</div>
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<a href="http://1.bp.blogspot.com/-gl8yNPA_sH8/T_WurncpjSI/AAAAAAAABQw/edD-PUpf2n0/s1600/IMG_0767.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="133" src="http://1.bp.blogspot.com/-gl8yNPA_sH8/T_WurncpjSI/AAAAAAAABQw/edD-PUpf2n0/s200/IMG_0767.JPG" width="200" /><span class="Apple-style-span" style="-webkit-text-decorations-in-effect: none; color: black;"></span></a><a href="http://4.bp.blogspot.com/-8q4Q08vjIqU/T_Wu4AT3uKI/AAAAAAAABQ8/pYgZn3sKtpU/s1600/IMG_0768.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="133" src="http://4.bp.blogspot.com/-8q4Q08vjIqU/T_Wu4AT3uKI/AAAAAAAABQ8/pYgZn3sKtpU/s200/IMG_0768.JPG" width="200" /></a></div>
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The Boxes</div>
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<a href="http://3.bp.blogspot.com/-G6eM8gSDGhA/T_WvH5bZqmI/AAAAAAAABRE/zGO2XMMeIKg/s1600/IMG_0771.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="http://3.bp.blogspot.com/-G6eM8gSDGhA/T_WvH5bZqmI/AAAAAAAABRE/zGO2XMMeIKg/s320/IMG_0771.JPG" width="320" /></a></div>
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Ready for her new playscape!</div>
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<a href="http://4.bp.blogspot.com/-awuCLCTWF-Y/T_WvTOnPidI/AAAAAAAABRQ/Ylj5f4pydFU/s1600/IMG_0775.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="http://4.bp.blogspot.com/-awuCLCTWF-Y/T_WvTOnPidI/AAAAAAAABRQ/Ylj5f4pydFU/s320/IMG_0775.JPG" width="320" /></a></div>
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Keeping busy while she waits. . .</div>
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<a href="http://4.bp.blogspot.com/-CdgzIDyGHxQ/T_WvgiJURwI/AAAAAAAABRY/qNqqLybl_KA/s1600/IMG_0777.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="http://4.bp.blogspot.com/-CdgzIDyGHxQ/T_WvgiJURwI/AAAAAAAABRY/qNqqLybl_KA/s320/IMG_0777.JPG" width="320" /></a></div>
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Ready to build!</div>
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<a href="http://1.bp.blogspot.com/-7uc2tTAXmhk/T_WvsfPyBjI/AAAAAAAABRk/B6ORwvUH1wY/s1600/IMG_0781.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="http://1.bp.blogspot.com/-7uc2tTAXmhk/T_WvsfPyBjI/AAAAAAAABRk/B6ORwvUH1wY/s320/IMG_0781.JPG" width="320" /></a></div>
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Day 1</div>
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<a href="http://2.bp.blogspot.com/-j9T4aQQOXrw/T_WxXrX0dTI/AAAAAAAABRs/LmY497Mn8JQ/s1600/IMG_0785.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="http://2.bp.blogspot.com/-j9T4aQQOXrw/T_WxXrX0dTI/AAAAAAAABRs/LmY497Mn8JQ/s320/IMG_0785.JPG" width="320" /></a></div>
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Trying out the toddler swing.</div>
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<a href="http://2.bp.blogspot.com/-7hNhN1AJl5w/T_W2pZtekCI/AAAAAAAABR8/RIi5GvipbS4/s1600/IMG_0787.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="http://2.bp.blogspot.com/-7hNhN1AJl5w/T_W2pZtekCI/AAAAAAAABR8/RIi5GvipbS4/s320/IMG_0787.JPG" width="320" /></a></div>
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Trying out the slide</div>
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I think she likes it!!!!</div>
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ALL DONE!!!! Thanks to the help from Justin and Greg and lots of little helpers!</div>Mama Mason-Mannhttp://www.blogger.com/profile/06917976774636808205noreply@blogger.com4tag:blogger.com,1999:blog-602444691023096666.post-38603164222331883902012-06-18T16:57:00.000-04:002012-06-18T16:57:07.313-04:00Father's DayFirst to my husband, Stacey. I hope you got to enjoy your special day. Your family LOVES YOU VERY MUCH!!!!!!<br />
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<a href="http://3.bp.blogspot.com/-wWQqS956OOE/T9-Pj9DlEMI/AAAAAAAABPo/hqGywH_nI7I/s1600/IMG_0705.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="http://3.bp.blogspot.com/-wWQqS956OOE/T9-Pj9DlEMI/AAAAAAAABPo/hqGywH_nI7I/s320/IMG_0705.JPG" width="320" /></a></div>
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Xander, Sadie and Chloe's gift to daddy.</div>
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<br /></div>
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Next, to my dad, I hope you have a wonderful father's day. I love you very much.</div>
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<a href="http://1.bp.blogspot.com/-ZvS7z8_umq0/T9-QoZoe0OI/AAAAAAAABP0/XR1_k992-mE/s1600/IMG_0541.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="http://1.bp.blogspot.com/-ZvS7z8_umq0/T9-QoZoe0OI/AAAAAAAABP0/XR1_k992-mE/s320/IMG_0541.JPG" width="320" /></a></div>
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Me and my dad on Cinco de Mayo</div>
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<br /></div>
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And Father's Day can't pass without thoughts of love and loss, for my step-father Sam and father-in-law Al. Both men played an important role in my life and my children's lives and I miss them dearly.</div>
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<a href="http://4.bp.blogspot.com/-F7jVvVNxSig/T9-U2_mwIRI/AAAAAAAABQQ/9s2mezl_wzg/s1600/Bah-Pah+and+Sadie+newborn.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="http://4.bp.blogspot.com/-F7jVvVNxSig/T9-U2_mwIRI/AAAAAAAABQQ/9s2mezl_wzg/s320/Bah-Pah+and+Sadie+newborn.jpg" width="320" /></a></div>
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Bah-Pah with Sadie.</div>
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<a href="http://3.bp.blogspot.com/-fK9cZvEZJ9c/T9-R8Km16OI/AAAAAAAABP8/JYKdzxeIdi4/s1600/100_2738.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="180" src="http://3.bp.blogspot.com/-fK9cZvEZJ9c/T9-R8Km16OI/AAAAAAAABP8/JYKdzxeIdi4/s320/100_2738.JPG" width="320" /></a></div>
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My step-dad Sam, AKA "Bah-Pah" by my kids</div>
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<br /></div>
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<a href="http://1.bp.blogspot.com/-UjcBh9G3E8w/T9-UdtTEtFI/AAAAAAAABQI/l4D8NWcuJzw/s1600/Al+bw.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://1.bp.blogspot.com/-UjcBh9G3E8w/T9-UdtTEtFI/AAAAAAAABQI/l4D8NWcuJzw/s320/Al+bw.jpg" width="213" /></a></div>
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An old pic, but he was just so handsome! We miss you Grandpa Al!</div>
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Lots of love in my heart and head for these men. </div>
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Before we finish thought you might enjoy a little montage from our day at the RI Air Show yesterday. Don't worry it's short and sweet. :)</div>
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<br />
<div>
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</div>Mama Mason-Mannhttp://www.blogger.com/profile/06917976774636808205noreply@blogger.com0tag:blogger.com,1999:blog-602444691023096666.post-45602544963937110262012-06-15T11:04:00.000-04:002012-06-15T11:04:54.006-04:00Everyone Should Have One!!!!<span style="font-family: Calibri;">So you’ve probably assumed by the title that I’m talking
about a child with Down syndrome and although I DO feel we are BLESSED to have
Chloe, that’s not what I’m talking about today.<span style="mso-spacerun: yes;">
</span>Actually, this post has little to do with Down syndrome or even Chloe,
but rather it’s about ME this time.<span style="mso-spacerun: yes;"> </span></span><br />
<br />
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<span style="font-family: Calibri;">I just had THE MOST wonderfully relaxing experience and I
wanted to share it with everyone.<span style="mso-spacerun: yes;"> </span>Back in
May for my birthday my mother gave me a gift certificate for either a massage
or CranioSacral Therapy.<span style="mso-spacerun: yes;"> </span>Since I have
fibromyalgia as much as I LOVE massages they tend to feel GREAT at the time,
but can leave me feeling sore or achy.<span style="mso-spacerun: yes;">
</span>And the woman Terri Laggis at Wisteria Healing Arts Center in Madison
had thought CranioSacral Therapy might be the way to go for me.<span style="mso-spacerun: yes;"> </span>Boy was she ever right!!!!<span style="mso-spacerun: yes;"> </span>It was THE MOST relaxing thing I’ve ever had
done.<span style="mso-spacerun: yes;"> </span>I suffer from depression and
anxiety too and this therapy brought my body to a level of relaxation that I
haven’t felt in a long time.<span style="mso-spacerun: yes;"> </span></span></div>
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<a href="http://3.bp.blogspot.com/-7C_9wnqc9vA/T9tOsjenjmI/AAAAAAAABPc/PxMqi66t4h0/s1600/WisteriaHome.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="150" src="http://3.bp.blogspot.com/-7C_9wnqc9vA/T9tOsjenjmI/AAAAAAAABPc/PxMqi66t4h0/s200/WisteriaHome.jpg" width="200" /></a></div>
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<span style="font-family: Calibri;">So why am I writing about this?<span style="mso-spacerun: yes;"> </span>Because many of you out there may have never
heard of it, CranioSacral Therapy, and I wanted to share in a good thing.<span style="mso-spacerun: yes;"> </span>So if you’re local I HIGHLY recommend Terri
at Wisteria but if you’re not, look into it.<span style="mso-spacerun: yes;">
</span>It’s well worth the money and effort.<span style="mso-spacerun: yes;">
</span>I plan on going back again. . . and again. . . and again.</span></div>
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<span style="font-family: Calibri;">It’s a good day.</span></div>
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<span style="font-family: Calibri;">Okay, so I couldn’t end a post without a picture of
Chloe.<span style="mso-spacerun: yes;"> </span>Enjoy.</span></div>
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<a href="http://2.bp.blogspot.com/-EBqaO2n4x_M/T9tOCMM7OQI/AAAAAAAABPU/LNm6GU1VFwI/s1600/IMG_0692.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://2.bp.blogspot.com/-EBqaO2n4x_M/T9tOCMM7OQI/AAAAAAAABPU/LNm6GU1VFwI/s320/IMG_0692.JPG" width="213" /></a></div>Mama Mason-Mannhttp://www.blogger.com/profile/06917976774636808205noreply@blogger.com1tag:blogger.com,1999:blog-602444691023096666.post-52495047184944077972012-06-10T10:57:00.001-04:002012-06-10T10:57:44.386-04:00Rainbows<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-fgocYrtqAXk/T9SpWeSmYxI/AAAAAAAABN4/iTgEROzA5sc/s1600/IMG_0644.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="http://1.bp.blogspot.com/-fgocYrtqAXk/T9SpWeSmYxI/AAAAAAAABN4/iTgEROzA5sc/s320/IMG_0644.JPG" width="320" /></a></div>
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<span style="font-family: Calibri;">There’s something about a rainbow that gives me hope.<span style="mso-spacerun: yes;"> </span>Last night while it was raining, yet the sun
was shining off in the distance, we saw a beautiful full-sky rainbow.<span style="mso-spacerun: yes;"> </span>Obviously the photograph doesn’t capture its
natural beauty or its magic, but I wanted to give you an idea of what we saw.</span></div>
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<span style="font-family: Calibri;">Things around here have been pretty good, except for a very
sick mother-in-law/grandma out in Montana.<span style="mso-spacerun: yes;">
</span>But looking through the rain to the sun and out to the beautiful rainbow
gives me strength and hope to KNOW she’s going to be okay.<span style="mso-spacerun: yes;"> </span>A little time, LOTS of love and caring, and
good positive mojo and prayer should get her through this tough time.<span style="mso-spacerun: yes;"> </span>Something about that rainbow gives me hope. .
.</span></div>
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<a href="http://1.bp.blogspot.com/-46P-VUJqmfM/T9SqT8rCzyI/AAAAAAAABOA/fIT2cjS-iNE/s1600/IMG_0545.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="http://1.bp.blogspot.com/-46P-VUJqmfM/T9SqT8rCzyI/AAAAAAAABOA/fIT2cjS-iNE/s320/IMG_0545.JPG" width="320" /></a></div>
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<span style="font-family: Calibri;">Chloe had her 6-month well-visit last week.<span style="mso-spacerun: yes;"> </span>Talk about magical!<span style="mso-spacerun: yes;"> </span>Watching her strut into the doctor’s office
with her monkey harness back-pack on with a sense of confidence that is newly
surfacing in her was like a gift.<span style="mso-spacerun: yes;">
</span>Smiling, greeting everyone, approaching the toys as if she OWNED them
(not in a possessive way, but in an I-know-just-what-to-do-with-this-stuff
way).<span style="mso-spacerun: yes;"> </span>Then the doc came out and she
greeted him with a BIG hello and smile and bounded into his office ready to
go.<span style="mso-spacerun: yes;"> </span>“Play” she signed and said.<span style="mso-spacerun: yes;"> </span>The next 45-minutes to an hour were spent
watching her captivate our wonderful pediatrician who sat next to her on the
little kiddie chair when he was invited with a pat on the chair and snuggled
with her when she crawled up into his lap.<span style="mso-spacerun: yes;">
</span>We all sat cross-legged on the floor and Chloe beamed at her ability to
do so and be a part of the “group”.<span style="mso-spacerun: yes;"> </span>We
discussed all the wonderful progress she’s made and of course covered the
medical basics.<span style="mso-spacerun: yes;"> </span>It was an all around
fantastic visit.</span></div>
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<a href="http://4.bp.blogspot.com/-xhURZSSspZw/T9Sv2ZnAeaI/AAAAAAAABOY/Tl-K3j5d9mQ/s1600/IMG_0642.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://4.bp.blogspot.com/-xhURZSSspZw/T9Sv2ZnAeaI/AAAAAAAABOY/Tl-K3j5d9mQ/s320/IMG_0642.JPG" width="213" /></a></div>
<br /><span style="font-family: Calibri;">Sadie is busy with school and reading and writing stories
and poems.<span style="mso-spacerun: yes;"> </span>She recently wrote a
poem/bookmark for me that I just love called "Loveable":</span></div>
<span style="font-family: Calibri;">My mother is a loveable person.</span><br />
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<span style="font-family: Calibri;">She is a diamond,</span><br />
<span style="font-family: Calibri;">Shiny as can be.</span><br />
<span style="font-family: Calibri;">She tucks me in my bed.</span><br />
<span style="font-family: Calibri;">I look at her when she tucks me in bed</span><br />
<span style="font-family: Calibri;">And think</span><br />
<span style="font-family: Calibri;">“You are so loveable”.</span></div>
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<a href="http://4.bp.blogspot.com/-y9OXPPX7rko/T9SwnmfQHvI/AAAAAAAABOg/bJBHE3OjyuY/s1600/Amy's+IPhone+043.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://4.bp.blogspot.com/-y9OXPPX7rko/T9SwnmfQHvI/AAAAAAAABOg/bJBHE3OjyuY/s320/Amy's+IPhone+043.JPG" width="239" /></a></div>
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<span style="font-family: Calibri;">When she isn’t being sweet and fun-loving, she’s a difficult
spoiled little middle child who HATES her mother!!!!<span style="mso-spacerun: yes;"> </span>LOL The ups and downs of being 6!<span style="mso-spacerun: yes;"> </span>She is looking forward to summer and camps
and vacations and most of all a visit from cousin Macy for Camp Mason-Mann.</span></div>
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<a href="http://3.bp.blogspot.com/-yJ6PgOQ6has/T9SxEowPOPI/AAAAAAAABOo/qiP4Sb_I7m4/s1600/Amy's+IPhone+001.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://3.bp.blogspot.com/-yJ6PgOQ6has/T9SxEowPOPI/AAAAAAAABOo/qiP4Sb_I7m4/s320/Amy's+IPhone+001.JPG" width="239" /></a></div>
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<span style="font-family: Calibri;">Xander, with his handsome new haircut, is busy breaking
hearts.<span style="mso-spacerun: yes;"> </span>After a very swollen groin lymph
node from an infection on his leg, he is now healthy and also looking forward
to summer vacation.<span style="mso-spacerun: yes;"> </span>He’ll be enjoying a
variety of camps as well as some days just hanging around at home.<span style="mso-spacerun: yes;"> </span>Maine is always a big hit with him and he
can’t wait for Macy to come (they’re doing a CSI-type camp together in the
mornings).<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: Calibri;">Stacey and I are doing well, minus our worries about
Stacey’s mom.<span style="mso-spacerun: yes;"> </span>We both feel healthy
(knock on wood) and strong and aren’t the “hot messes” we were a few months
ago.<span style="mso-spacerun: yes;"> </span>Stacey has just finished up his
spring 6-day-work schedule and is enjoying some time with the family mixed with
lots of yard work.<span style="mso-spacerun: yes;"> </span>As for me, I’m just
enjoying my family and life and getting ready for the summer.<span style="mso-spacerun: yes;"> </span>My job is going well and I feel comfortable
with my current work/family balance.<span style="mso-spacerun: yes;"> </span>We
have THE BEST nanny in the world, so that makes it that much better.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: Calibri;">So please direct your prayers for us towards Stacey’s mom in
hopes of a speedy recovery.<span style="mso-spacerun: yes;"> </span>We of course
love her very much and want her better soon!!!!<span style="mso-spacerun: yes;">
</span>We look so forward to our visit with her and hope she is well enough in
time to visit us in the fall.</span></div>
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<span style="font-family: Calibri;">**Since writing this Xander whacked his thumb playing drums and took a trip to the ER for an XRay (which was negative), started getting bullied at school and Grandma Linda was delayed from being released from the hospital, but we're still all in good spirits and hopeful for a speedy recovery for Linda and a quick resolution to Xander's bullying. </span></div>
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Peace and love to all our friends and family!</div>Mama Mason-Mannhttp://www.blogger.com/profile/06917976774636808205noreply@blogger.com0tag:blogger.com,1999:blog-602444691023096666.post-17663252395459242212012-05-23T16:27:00.002-04:002012-05-23T16:27:55.485-04:00Sometimes I Wish<span style="font-family: Calibri;">there wasn’t the Down syndrome label.<span style="mso-spacerun: yes;"> </span>Don’t get me wrong, I’m not wishing away Down
syndrome or even wishing that Chloe didn’t have “it”.<span style="mso-spacerun: yes;"> </span>I love her just the way she is.<span style="mso-spacerun: yes;"> </span>I truly deeply love her JUST THE WAY SHE
IS.<span style="mso-spacerun: yes;"> </span>But having this label creates these
expectations.<span style="mso-spacerun: yes;"> </span>Expectations of her. . .
expectations of me. . . just expectations.<span style="mso-spacerun: yes;">
</span>I mean I know everyone has expectations put on them, but I just don’t
want there to be specific expectations of her BECAUSE she has Down
syndrome.<span style="mso-spacerun: yes;"> </span>What she’ll learn, HOW she’ll
learn, WHO SHE’LL ACTUALLY BE.<span style="mso-spacerun: yes;"> </span>And then
the expectations on me. . . to be her advocate. . . to help her be the BEST she
can be.<span style="mso-spacerun: yes;"> </span>I mean I do that for all my
kids, but there’s all this pressure with her because of the DOWN SYNDROME.<span style="mso-spacerun: yes;"> </span>Sometimes. . . okay, a lot of the time. . . I
just want her to be HER.<span style="mso-spacerun: yes;"> </span>I don’t want to
have to push her all the time.<span style="mso-spacerun: yes;"> </span>I want to
step back and see who she’s going to be.<span style="mso-spacerun: yes;">
</span>I’m not saying I don’t want to provide her with therapies and services
that will help her along, but I guess I’m just not one of those hard-core moms
that feels I need to PUSH PUSH PUSH so she can reach her maximum
potential.<span style="mso-spacerun: yes;"> </span>Quite frankly I’m not like
that with ANY of my kids.<span style="mso-spacerun: yes;"> </span>Now I’m not
saying there’s anything wrong with parents who do do that.<span style="mso-spacerun: yes;"> </span>I’m just coming to the realization that that’s
not me.<span style="mso-spacerun: yes;"> </span></span><br />
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<span style="font-family: Calibri;">But regardless about how I feel sometimes (a lot of the
time), I’ll take the Down syndrome and its label because on the positive side I’ve
met the most amazing people IN THE WORLD through this syndrome that my daughter
happens to have and I know it gives us some sort of framework to work with when
we’re trying to get her help.<span style="mso-spacerun: yes;"> </span>I know
kids who have “special needs” but don’t have a diagnosis have a much more
difficult time, especially managing the school systems.<span style="mso-spacerun: yes;"> </span>If the world would just accept people for who
they are our “special” kids would really be seen as just that. . . special. . .
instead of different or weird.<span style="mso-spacerun: yes;"> </span>One can
only hope that someday, the world will be more accepting.</span></div>
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Chloe meeting her "cousin" William! She LOVES HIM!Mama Mason-Mannhttp://www.blogger.com/profile/06917976774636808205noreply@blogger.com0tag:blogger.com,1999:blog-602444691023096666.post-85187597891244112552012-03-24T15:00:00.000-04:002012-03-24T15:00:36.500-04:00The Escape ArtistUt oh. . . we're in trouble. . .<br />
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Chloe had her annual heart evaluation appointment on Monday and after 2 hours we got the good news that she is doing GREAT! Her heart looks fabulous. She still has a narrowing of her aortic arch, but that doesn’t seem to be causing any problems and she also still has a “leaky valve” and will continue to take medication for that. But other than that her ticker is working just fine and we’ve got some happy hearts in this household!!! She’s reached 25lbs finally. Our little peanut is growing! At 3 ½ years old she’s fitting into 2T clothes. Not too bad. So the mystery of her cold foot / warm foot remains unanswered and probably will go unanswered (Chloe being Chloe), but the heart doc recommended a visit to a rheumatologist at Yale. Not sure what our pedi will say about that, so we’ll see. Maybe we’ll give it more time to see if it happens more. Heart is working fine so I’m feeling much more relaxed. Glad to get that appointment out of the way.
As for the rest of the gang, we’ve slowly recovered from our various illnesses and seem to be back to “normal” – whatever that is (although since writing this first draft, I’ve developed yet another cold). We are ready for spring. . . bring it!Mama Mason-Mannhttp://www.blogger.com/profile/06917976774636808205noreply@blogger.com0tag:blogger.com,1999:blog-602444691023096666.post-27442343386834600442012-03-03T10:58:00.000-05:002012-03-03T10:58:02.247-05:00Here's a video of Chloe "reading" a book. She obviously isn't actually reading, but the highlight of the video is her using word approximations and signs together. You go girl!!!!<br />
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<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/0cy4YGz5SAE?feature=player_embedded' frameborder='0'></iframe></div>Mama Mason-Mannhttp://www.blogger.com/profile/06917976774636808205noreply@blogger.com0tag:blogger.com,1999:blog-602444691023096666.post-51268060302405516812012-02-28T14:59:00.001-05:002012-02-28T14:59:41.342-05:00Chloe Being ChloeChloe likes to keep me on my toes. She likes to make me worry. Okay, maybe she doesn’t actually LIKE it, but that’s what she does anyway. So what’s she been up to as of late? First, let’s start with her “cold foot”. She continues to have an occasional cold foot, leaving the docs stumped because it’s not consistently cold and she doesn’t seem to have any pain. But the cardiologist (heart doc) moved up her echocardiogram (heart ultrasound) from April 30th to March 5th so we can rule out cardiac issues. We’re all feeling fairly confident that it’s not a heart issue, but that little nag of worry still hides in MY heart. <br />
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The other drama came with a bout of the stomach bug last week. She got it Monday night and each time she vomited (which was about every 15 minutes for 2 hours) her tongue turned a purplish-blue color. It was startling enough that I called the pedi. He didn’t have an answer as to why that was happening because she didn’t appear in distress and the color around her mouth was fine. Probably just Chloe being Chloe. He ordered some Zofran to stop the vomiting and she eventually calmed down. Over the next few days she continued to have these very purplish-blue feet and hands and just generally didn’t look good. Another call to the pedi and it was determined that she wasn’t regulating her temperature due to the virus. Nothing to be alarmed about. Just Chloe being Chloe. <br />
<br />
Everyone keeps telling me that her plumbing (aka her heart) is fixed, but I can’t help but always wonder if there isn’t something ELSE going on. I can’t help but remember when she was 2 weeks old and went into severe congestive heart failure for unexplained reasons. “It’s NOT related to her AVSD”, they told me. “We don’t know what it is”. I knew those words would one day come back to haunt my memories. Do I think this is that? Absolutely NOT. She is NOT in any distress. NO breathing issues of any kind (aside from a blue tongue when vomiting). But I guess I’m just predisposed to worry about her now. Despite all my worrying, it’s more likely than not, that it’s just Chloe being Chloe, but I’ll be relieved to hear all looks good at her annual cardio appointment next Monday! Keep her in your thoughts and prayers, if you don’t mind, for some resolution. As always it’s greatly appreciated. <br />
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As for the rest of the crew, a quick update: Sadie had the stomach bug last week too, but is recovered and back to her old self. She’s finally decided on an “activity” all her own – piano lessons. I’ll be looking into that soon. Xander played in the Squirt Norris Division State Hockey Tournament this past weekend and his team went into the championship game on Sunday undefeated. They lost 5-4 in a well-played nail-biter. Turns out Xander was playing with the stomach bug and promptly got off the ice and vomited all over! YIKES! He’s been in bed recovering since then. Oh and a trip to the dentist showed he’s grinding his teeth and is potentially a cause of his headaches. Stacey finally had a sleep study and found he has sleep apnea. Hopefully once he gets on the CPAP he’ll start feeling better. As for me, I got the stomach bug last week too and took some time to recover, but am now feeling much better. I have my sleep consult tomorrow morning. Hopefully I’ll get some answers. :) I think that about covers it! Until next time. . . <br />
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She’s had it now for over a week. Runny, gooky nose and cough. We got the vaporizer running at night and I’m using the saline spray, which she is surprisingly good about. She started out with a fever and cough, but that only lasted about 24 hours. And then the full-blown cold took over. But I think slowly she’s getting better. She still plays with her usual zest. The only WEIRD thing that’s been going on is she’s been waking with one ICE COLD foot and one warm foot. It’s very weird. She usually has TWO ice cold feet when she wakes in the morning, but 3x now it’s been just one foot. And it’s not consistent. 1x was about a week ago and then the other 2x were yesterday and the day before. I forgot which foot it was the first two times so I’m waiting for it to happen again to determine if it’s the same foot (the RIGHT one). I spoke to her cardiologist today (after waiting ALL DAY yesterday for NO CALL back) who said it didn’t sound like her heart, but that she would be willing to move up her April 30th annual appointment to mid-March. They want to look at her aortic arch. She doubts that’s the cause though because she thinks it would be cold on both sides and all the time. She also said if it IS occurring on the same side each time that she thinks our pedi should order a Doppler ultrasound to check her leg vasculature. I’ve got a call into him next. . . so stay continued. It’s probably one of those weird things that will turn into being nothing. Thank goodness she’s otherwise acting “normal” LOL because otherwise I’d be more worried!<br />
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I was initially going to title this post “A Hot Mess” and talk about what a mess I’ve been with a potential sleep disorder, depression and anxiety plaguing me, but honestly, who wants to hear about that?? I have so many good things to write about and I’ve been so bogged down with my own . . . shall we say “set-backs” that I haven’t been able to muster the time or energy to properly update all of Chloe’s progress and good news. So here it is. . <br />
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Back in December Chloe was awarded a grant for an IPad. She’s 3 years old and is still fairly “non-verbal”, communicating primarily with some signs and word approximations. But although she has around 100 different signs, she wasn’t really using them or her word approximations to communicate effectively. So coincidence or not, once she got her IPad her language and communication skills, including signing, started to explode. Maybe it’s the more time I (and her AWESOME nanny) specifically spend with her since we use it together, or that school just happened to “click” for her around the same time. . . whatever the case is, she got the IPad and her communication started to soar. It’s so wonderful to watch her playing with it and repeating back the various words and imitating sounds. She still has a LONG way to go and struggles with certain sounds/words (like “Rudy” our cat, or “Chloe”), but what a gift to see her pride in her accomplishments. <br />
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Believe it or not, the other wonderful thing Chloe’s got going on is her health. Wow, I never thought I’d find myself saying THAT!!!! She’s doing so great. Eye doc, endocrinologist (thyroid), and pedi have all given her clean bills of health! This includes an all-clear neck x-ray (there is the potential for a small percentage of kids with Ds to have weak necks that can put them at risk)! She was also negative for Celiac Disease! We’ve got her cardiology appointment coming up in April, which I completely expect to be nothing but excellent. And I think that covers it. I mean, minus of course, a few colds and tummy troubles, which she was able to fight all on her own. <br />
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Chloe had her first school play-date a few weekends ago. She was invited to a “typical peer’s” house (that always cracks me up. . . what the hell does that mean anyway???) for a wonderful afternoon. I stayed with her of course, but she had a blast. I had maybe one fleeting moment of thinking, gosh it would be so different if Chloe didn’t have Ds. . . but then I remembered that Chloe wouldn’t be Chloe and I love her for who she is! Even though she had the attention span of a flea, she clearly brought joy to her friend and her friend’s family. They were thoroughly enjoying her. Yes, I know we are lucky to have found such supportive friends, and I’m sure there will be days when we are faced with judgment, but for today, things are good. <br />
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I can’t end without an update on my other munchkins (haa haa, they’ll probably kill me for calling them that!!!!) Xander celebrated his 11th birthday last week. 11 years is so hard to believe. Doesn’t it go by so fast???? He’s such an amazing kid with a wonderful sense of humor and maturity about him that ironically gets him in trouble. He’s enjoying his first year of offense in hockey and adjusting to being a middle schooler (our district has a lower middle for 5th and 6th and an upper middle for 7th and 8th). He’s an amazing big brother to BOTH Chloe and Sadie, although of course they all have their moments. Xander’s also been struggling with headaches and nausea for about a month now, but we’re working on getting to the bottom of it. . . we THINK they might be “stress headaches”. Stay tuned. . . <br />
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As for Sadie. . . well what can one even say about her? She’s a true girl in every sense of the word. She loves make-up and clothes and shoes and pretend play. She wants to be a teacher and LOVES first grade. She isn’t interested in “signing up” for anything. She’s definitely a homebody and enjoys doing stuff here. She’s also a great sister, although she certainly saves all her “challenging behaviors” for us at home! <br />
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I think that covers it. You don’t want to hear about Stacey. . . he’s a “hot mess” too. LOL Summer can’t get here soon enough (Spring is his busy time so we’re waiting for SUMMER!) But all-in-all we’re holding our own.Mama Mason-Mannhttp://www.blogger.com/profile/06917976774636808205noreply@blogger.com0tag:blogger.com,1999:blog-602444691023096666.post-53804866633380454492012-01-14T19:35:00.002-05:002012-01-14T19:35:36.848-05:00Some Pics<div class="separator" style="clear: both; text-align: center;">
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<a href="http://2.bp.blogspot.com/-FmZfkpwpeH0/TxIfQE0uoxI/AAAAAAAABKo/ulbKOOHN_c0/s1600/IMG_0142.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" kba="true" src="http://2.bp.blogspot.com/-FmZfkpwpeH0/TxIfQE0uoxI/AAAAAAAABKo/ulbKOOHN_c0/s320/IMG_0142.JPG" width="320" /></a></div>Mama Mason-Mannhttp://www.blogger.com/profile/06917976774636808205noreply@blogger.com0tag:blogger.com,1999:blog-602444691023096666.post-76305515458242634422011-11-15T10:31:00.001-05:002011-11-15T10:34:24.477-05:00Whirling DervishThose are the words recently used to describe our dear sweet Chloe. I have to admit, I had to look up what the heck it was, but just from the sound of it, I figured it would fit her. According to Wikipedia.com, they are known as the <strong>Whirling Dervishes</strong> due to their famous practice of whirling (spinning one’s body in repetitive circles). Chloe does go through life spinning away. Tasmanian Devil also comes to mind. . . I picture her spinning through the house wiping things out as she goes, leaving a path of destruction behind. Or maybe even better yet, an octopus with many arms and tentacles, reaching for and touching, and yes, exploring, EVERYTHING she comes into contact with. A simple example has to be bedtime in the bathroom. She just had a good soaking and it’s time to get her out, while her sister remains in the tub finishing up. I’ve got her all dry and dressed and reach quickly for the toothpaste and toothbrush. As I let go of her for a mere second to put the toothpaste ON the brush, she darts (or whirls) over to the tub and in a flash has her hands in the tub and is hoisting a leg up over the side. I quickly grab her, pull her towards me and start brushing her teeth. As I again let her go briefly to get her sister out, Chloe’s fast like lightening speed leads her to the toilet, where plop, her hands are in. ARGH! Hand washing (and ARM washing, for that matter) and a whole new outfit are in order. All that in a quick 5 minutes. And this is typical of Chloe in the world, hands on or in everything, moving from one thing to another. Don’t get me wrong, I appreciate her desire to learn about and explore her world with the zest she exhibits. I truly think it is one of her gifts. From sick baby to this energized, curious little girl, I DO absolutely count our blessings. It’s just that sometimes, and I really do mean just sometimes, I find myself EXHAUSTED. Mentally and physically exhausted. I know that it’s okay and even on those days when I’m not even sure how I’m going to do this, I can think back to those days of struggle that SHE had and realize that this tough little cookie standing before me is just embracing life for what it is – a series of amazing wonders. . . even if it’s water in the tub or water in the toilet (ewww!), it is amazing to HER and I need to respect that. <br />
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It’s interesting. . . we spent this past Saturday at the CT Down Syndrome Congress convention. I was extremely moved repeatedly by the key note speaker and his stories of people with Down syndrome and how they have repeatedly overcome the odds, just like our Chloe. But I also found myself afraid at times. I don’t THINK of Chloe as having Down syndrome most of the time. I just think of her as Chloe. It helps me to NOT think about the future with her sometimes. For example, will she ever get out of this toddler-like stage of getting into everything????? Sometimes I don’t want to hear that the answer is she may not for a long time, because that just overwhelms me… to think like that. Because when I look at HER and see HER and not her Down syndrome I can focus on who she is and who I think she will become because of who SHE IS and not what Down syndrome “predicts” she will become. . . but being at the conference reminds me that she does have this thing called Down syndrome. And it is NOT who Chloe is, but is rather a very important PART OF who she is. And that is something I will embrace.<br />
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<br />Mama Mason-Mannhttp://www.blogger.com/profile/06917976774636808205noreply@blogger.com1