tag:blogger.com,1999:blog-38250008689766016102024-03-04T23:12:46.564-08:00Chromosomally EnhancedAnonymoushttp://www.blogger.com/profile/06551567304485458524noreply@blogger.comBlogger479125tag:blogger.com,1999:blog-3825000868976601610.post-20246824425328404292017-11-04T16:12:00.000-07:002017-11-04T16:15:27.910-07:00Hello again!! <div dir="ltr" style="text-align: left;" trbidi="on">
this video will not disappoint!<br />
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<a href="https://www.youtube.com/watch?v=AfLfqC2sXOE&feature=youtu.be" target="_blank">https://www.youtube.com/watch?v=AfLfqC2sXOE&feature=youtu.be</a><br />
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<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/AfLfqC2sXOE/0.jpg" frameborder="0" height="266" src="https://www.youtube.com/embed/AfLfqC2sXOE?feature=player_embedded" width="320"></iframe></div>
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Anonymoushttp://www.blogger.com/profile/06551567304485458524noreply@blogger.com0tag:blogger.com,1999:blog-3825000868976601610.post-5831545372817808172015-10-18T18:02:00.000-07:002015-10-18T18:35:37.756-07:00awareness...<div dir="ltr" style="text-align: left;" trbidi="on">
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the dreaded r-word...as a parent of a child born with Down syndrome I have moments when the r-word brings on a panic attack...I become angry, sad, my blood pressure rises...sometimes I cry sometimes I bite back at the person who said it...and sometimes I breath deep and I become a role model for my children...but I really never know how I will deal with it..I actually practice how to respond...I want to be a advocate that is positive and enlightening...a advocate that has composure and self assurance that can effectively guide the perpetrator to see the light that words matter...people first language matters...Maddie is Maddie first a person..not a r-word, a downsy, a downs kid...nope all are offensive to this Mama...if I choose not to say something I have failed Maddie...this is great alternatives for the r-word...courtesy of my awesome and thoughtful brother-in-law...enjoy!</div>
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Anonymoushttp://www.blogger.com/profile/06551567304485458524noreply@blogger.com4tag:blogger.com,1999:blog-3825000868976601610.post-80165676076833365412014-09-08T12:27:00.001-07:002014-09-08T12:27:51.262-07:00What Maddie is up to...<div dir="ltr" style="text-align: left;" trbidi="on">
Maddie began kindergarden last week...not sure how this happened so fast...in the midst of raising Maddie it felt like time slowed down...her milestones came with long periods between celebrations...when she was a baby and toddler I literally thought Maddie would never get to where she is today...but she/we made it...it was anticlimactic at best...so in turn this week I pondered about why I was numb...this is what I think happened...Maddie simply put can do anything...the difference is that she gets there slower...she gets there and it looks different then what I have experienced...but it is not less and it is not more...it is just perfect for Maddie...I have a motto that raising Maddie is a marathon...not a race...I still compare Maddie; I probably always will...it's just my nature...sometimes it makes me feel insecure...sometimes it makes me sad...but what kills me, eats at me is that where she was last year did not want her...could not handle her...they acted as if it was a chore to have Maddie in their classroom...the sometimes email after I would repeatedly ask would say that Maddie was naughty, not listening, not on task...after her exit IEP they mentioned they stopped all sign language and pecs with Maddie...this was why they were having issues...Maddie is still pretty non verbal...she has words and we understand her and her therapy base program understands her...but if you do not take the time with Maddie she will not perform...she will not want to understand...and then she will be off on her own...getting into the sink or trying to escape...but this year...Maddie is busy!! And she is in the best of the best of programs in our public school system where the teachers want her and care for her and communicates with me and Chad...and is just present in Maddie's day to day....she then goes to her after school therapy program that is stellar offering speech, OT, PT, feeding, community life skills...daily! Yes I said daily minute by minute purposeful therapy...she goes swimming, climbing, jumping...holy cow...then on Fridays she has a dance/tumbling class that she absolutely loves with her friends from school...amazing...the lift in spirits in our whole home...because our girl is thriving and excelling...<br />
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Now if we can get her health to understand that we do not have time for more!! We went to the ophthalmologist a month ago and the pressure in her brain has not improved nor has her eye sight...so back to Denver we go next week to see the neurologist...best case we wait and see...worse case is unknown...I say unknown because this whole thing has been bizarre and scary...we also will see her pulmonary and GI doctors to check in on things...again best case is we will see them in 6 mo...worst case is hearing something that is not expected....more...more medications, more tests, more doctors, more visits...we need a break from all this and worry about what we will be for Halloween!</div>
Anonymoushttp://www.blogger.com/profile/06551567304485458524noreply@blogger.com4tag:blogger.com,1999:blog-3825000868976601610.post-54187200476323143342014-08-06T07:47:00.001-07:002014-08-06T07:47:38.791-07:00Worry..<div dir="ltr" style="text-align: left;" trbidi="on">
Why I worry?? It is actually more complex to answer then one may think...the cliche is that I just love my kiddos so much...because I had something so horrible happen to me...I have to be in control...surprisingly it's not really any of those cliches...of course I love my kids...of course I have had "bad" things happen to me and I am a bit of a control freak...but thats not it...<br />
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The simple short version...a moment can change everything...in one moment a life can be forever altered...if I can prevent that moment from happening...I will..would you not?? A couple of years ago we were in Washington D.C. and Max decided to get independent at the food court...horror!! So I let him go in and use a public bathroom alone...reminder we are from Wyoming! it did not go well on my part...I stood with the door open asking if he was ok every 5 seconds...disregarding the privacy of others...all I could think is my kid could be touched, fondled, taken...changed in a moment for life...did I apologize...nope...I probably should have...but I have no trust...but really do you???<br />
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I believe in fairy tales, love, mermaids, unicorns, and that world peace is obtainable...I want to trust...but I can't...not when it comes to my children and their lives...the statistic for a person with a disability to be sexually abused is 90% and 80% will be abused again...WTF...I know I cannot live by statistics...but if I can prevent it...why would I not...because I may offend someone...ok...so...<br />
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Trust is earned...being a part of my children's lives...is earned...we interview people to get jobs, to be our spouses...hell we even read reviews and research what car to buy, what neighborhood to live in...so why not interview the people spending time with your child...follow up with them...get to know them...reference check...to trust that some one person or a HR guru can do it better is very nice...but the reality is that your child is your business...your responsibility...<br />
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I am not sure their is a parent out there that would think...yeah I am glad I took no responsibility in the village that helped raise my child...No mother ever said...I would hate to hurt others feelings in being positively proactive...<br />
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At some point we have to let go of the thinking others want the "best" for us and will do anything to provide it...the bottom line is everyone that provides a service is in business to make money...either to pay their employees or to pay themselves...they may really want the "best" for our kids...but business will always be business...and hiring a person is risky no matter who they share DNA with, credentials, experience, if they go to church and believe in the "right" deity...a person has a mind you cannot see..and is subject to change...<br />
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I am the annoying parent...I call...I email...I pop in and observe...I ask who the assistants are...who has contact with my kids indirect or direct...am I overreacting...in others eyes including Chads...yes...in my mind...I am just doing what I feel is necessary...I guess only time and future therapy will tell if Me or Chads philosophy was "right"...</div>
Anonymoushttp://www.blogger.com/profile/06551567304485458524noreply@blogger.com1tag:blogger.com,1999:blog-3825000868976601610.post-56909191753695943432014-07-23T06:47:00.002-07:002014-07-23T06:47:27.976-07:00Terminology, Labels and Phrases<div dir="ltr" style="text-align: left;" trbidi="on">
Terms used to describe my kid...and my other kid...<br />
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Ordinary - no special quality or interest; common<br />
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Normal - usual, common type, natural, regular, typical, conforming to the standard<br />
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Different - not alike in character or <u><b>quality</b></u>; unusual, not ordinary<br />
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Special - a distinct or particular kind or character<br />
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There are words that drive me crazy! The above mentioned are some...they all have negative undertones regardless of how the person is meaning them to be...how about just describe Maddie or Max as....<br />
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Maddox -sister, daughter<br />
Maximus -brother, son<br />
better yet for both of them -HUMAN...<br />
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Max is often described as smart or interesting...negative perhaps...<br />
Maddie is described as special or different...negative perhaps...<br />
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in the hospital this past week Maddie and I were watching Frozen for the 134th time and I picked up on when Ana told the short bald dude asked if she was just "ordinary" and then her guy friend said she was "ordinary" and then apologized that he did not mean it as an insult...and that got me thinking about how we use words and how we receive labels...for example I do not see Max as "normal" I see him as "special"...I do not see Maddie as "special" but as "normal with extra zing"...when someone comments that Max is like any other 8 year old I am offended...if someone comments Maddie is like any other 5 year I ask what they have been smoking...my point is that labels and descriptions can be offensive to any parent...we have an idea of what we want or wanted in our child...that we created...we want to think our children are an extension of us...with that when that extension comes out different, special, unique, or ordinary we can get a little confused...my emotions and frustration truly are all over the place with labels...when someone comments on my child...very rarely do I want to hear it or know the label assigned to my child...whether it is white, male, female, nice, happy, smart, or slow...none of them sound good enough...<br />
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I am not saying I do not use Maddie's label to our advantage...I do...when going through a National Park we have pass that lets us in for free...all because of an Extra Chromosome...a label...its funny they ask who the person the pass belongs to?? we all point to Maddie...and they say oh ok! Thanks!...am I offended...nope...thankful I get in for free...<br />
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I guess it is a decision whether to be offended or not...personal choice...so from now on I am going to refer to myself and Maddie as a 'Basic Bitch' the urban dictionary says its just a extra regular female...I think that is classic! I am still working on what Chad and Max are best described as...<br />
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then there are the clumps of words that drive me crazy...the phrase that kills me is....and are continually said to me or about friends...<br />
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"you are doing it right"<br />
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WHAT does that mean????<br />
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I have not in my 40 years of life done anything "right"...just saying...I am the stumble in and hope for the best...Chad and I have done everything backwards...the next phrase..."they are good people" HUH! what is that..."good people"...do you live with them?? do you really know them?? because I am thinking you do not...people are HUMAN!! sometimes they cannot do it "right" because your "right" and their "right" do not line up...it is simple...really...stop labeling everything...remember that HUMANS are all "different and special" as well as "normal and ordinary"<br />
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soap box...perhaps!!<br />
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Anonymoushttp://www.blogger.com/profile/06551567304485458524noreply@blogger.com1tag:blogger.com,1999:blog-3825000868976601610.post-15064220144393869092014-07-21T05:24:00.000-07:002014-07-21T05:24:55.235-07:00Eyes...<div dir="ltr" style="text-align: left;" trbidi="on">
Maddie wears glasses -obviously...people often asked me how we knew she needed them...it was the simplest of things...her pediatrician commented during a routine visit at about 9 months old that she needed to see the ophthalmologist...so off we went...next was finding glasses that fit, stayed on, and were VERY durable; a challenge but we found them...funny they are from Walmart...best glasses so far $50 and full coverage on anything and everything that a kid can do to a pair of glasses...Maddie does not mess with her glasses...she needs them...plain and simple...so about 2 years ago our local ophthalmologist got it wrong...A teacher mentioned that she did not think Maddie can see with her glasses on!<br />
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Oh my mommy guilt!!<br />
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So I offended the doctor and got a second opinion...yep he was wrong...so we began seeing a regular eye doctor...love him!! He was really good with Maddie! So we did not return to the ophthalmologist...<br />
<br />
fast forward to March at our annual visit to the Down syndrome clinic they REALLY stressed that we needed to see the ophthalmologist again and we needed to see the one at Children's hospital...well that means another trip to Denver...so I put it off till the summer and when we had more time...mid June came fast and off we went to see the doctor...I kept thinking I should cancel and that it was a waste of time...I was annoyed that it was another visit...so trying to be positive I began to think of the cute selection of glasses they would have!<br />
<br />
During the initial exam Maddie was a ROCKSTAR!! Seriously she is so good at it all; matching the pictures, letting them look in her eyes and so on...then the ophthalmologist began her exam and the dreaded silence took over...I know this silence...the one that comes before a diagnosis, a test, and it always results in -more...extra...<br />
<br />
The doctor turns to me and says "has anyone ever told you that Maddie has fuzzy retinas"<br />
<br />
huh! What!! Um no! I start to laugh...because this is Maddie! In a nut shell...<br />
<br />
we go in for glasses and come out with a MRI...after pictures and ultrasound on her eyes...Maddie has a problem...and we do not know what it is...so 10 days later after insurance gave the ok the MRI confirmed that Maddie has to much pressure in her head and is causing her retinas to be swollen...<br />
<br />
hence fuzzy retinas...<br />
<br />
This is not optimal to say the least...am I relieved that it is not a tumor?? obviously...<br />
<br />
but really can we not just go to the doctor and have a "looks great! We will see you in a year" nope we get the you get to go see the neurologist in a week..because it is "urgent"... WTF...if something can go wrong or different or challenging...it will happen with Maddie!!<br />
<br />
this past week Maddie had her Spinal tap or lumbar puncture which ever you want to call it...and it confirmed that Maddie has to much fluid in her brain (pseudotumor cerebri, idiopathic intracranial hypertension) causing pressure on her optic nerve...causing her eye sight to worsen and possibly go lights out all together...they drained the excess fluid and she is now on a pill twice a day that will hopefully keep the fluid down and the pressure off her optic nerve...<br />
<br />
to say i am ok with this is a bit of a stretch...while we were waiting to be released by the hospital one of the doctors came in and said that we should be relieved that we are not being seen right away by the neurologist team because it means our child is not as bad as another child...i am gonna be honest with you..i was not relieved...i was not happy...Maddie was not happy...she has been put under anesthesia over 20 times in her short life...she has had as many surgeries and/or procedures done...and this one had to do with her brain...lets face it the only low risk, not a big deal surgery/procedure is done on someone else child...not your own...<br />
<br />
the up side of this is that Maddie's sight may improve...so new glasses!! the not so upside is that we have gained two more specialists that include monthly visits to Denver until further notice...Maddie of course is amazing...but her little body needs a break!! </div>
Anonymoushttp://www.blogger.com/profile/06551567304485458524noreply@blogger.com3tag:blogger.com,1999:blog-3825000868976601610.post-64456449322822253522014-04-01T12:03:00.003-07:002014-04-01T12:03:55.242-07:00Sshhh its a secret!<div dir="ltr" style="text-align: left;" trbidi="on">
But it is not...a secret...so in the hospital this past weekend the nurse asked me if Maddie has developmental delays...I ask her if she was serious...she said yes...I said you do understand what it means to be born with Down syndrome...right...she said yes...but I was thinking -no...Maddie was born with a extra chromosome...there is no reason to pretend that it's not there...Maddie is a product of how the sperm met the egg (meiosis)...I am sure some people like to think it is more...it makes them feel better like it is not their fault or what ever the reason may be...but a huge pet peeve of mine is that when you are talking with me...never pretend that the disability does not exist...or minimize it by saying she is like everyone else...she is not...Maddie is unique...and that is ok...Maddie learns different...and that is ok...do not whisper to me about things you notice...and for the love of humanity do not tell me about your second cousin or friend of a friend that had a child born with Down syndrome...I do not care...like ever...I may smile...but it's just because I am nice...<br />
<br />
kind of...<br />
<br />
Maddie was born with Down syndrome...I actually want her to marry a person with Down syndrome...I want her to be best friends with a person with that extra chromosome...seriously I do! I also want her to go to school with kiddos that also have extra challenges...to be honest a "normal" child just does not cut it for me...Maddie was born with Down syndrome and it does not make her a second class citizen...she is not high functioning or low functioning...she is a 4 almost 5 year old...she has selective hearing and a stubborn streak..<br />
<br />
and...<br />
<br />
exactly...<br />
<br />
Maddie is her own person (human)...the extra chromosome does not define her...please do not minimize it by telling me you didn't notice she was born with an extra chromosome...because you did...and I am not ashamed or embarrassed about it...embrace the cuteness...<br />
<br />
Please do not assume I want my child to be in the same classroom or activities as your child...and let's not pretend you did not have a fleeting thought of "oh no" Maddie may be in my child class/activity and take away from the learning time of my child..you thought it...it's ok...i get it...but it's not really ok is it...because I have to fight to be in the same room as a "normal" kid...she is a human with rights...that's it...and I do not want to have to explain it...or feel it...I want people to see Maddie for Maddie...not what the politically correct version of today is...it's that simple...I want Maddie to have people around her that like her because she is a great kid...not because it looks good for them...will I trust a "normal" kid/person that wants to be Maddie's friend...probably not...they can earn my trust...but it will be hard...because I am just that way...I have a home daycare...and the kiddos struggle to understand Maddie...Maddie sounds angry when she is not...she plays aggressive when she is trying not to...when she touches a kiddo she will pat her belly first because I have taught her since she was very young hands to self and then pat her belly with her hands...she thinks about it...and she always tries...but most of time it ends in a redirection with what should have been the appropriate touch or word...in reality Maddie's interactions with others can be awkward and strained....please do not pretend my WHOLE child does not exist...she does and that includes the extras that come along with it...I am ok with it...and it's not a dirty little secret that should be ignored...<br />
<br />
When being in the company of me think before you speak...understand your words and actions matter..it's not really that much different then me saying to you...so does your child have developmental delays?</div>
Anonymoushttp://www.blogger.com/profile/06551567304485458524noreply@blogger.com4tag:blogger.com,1999:blog-3825000868976601610.post-88556426814244281352014-03-18T12:13:00.004-07:002014-03-19T09:39:12.682-07:00Dear Mom, it's Ok...<div dir="ltr" style="text-align: left;" trbidi="on">
I really like the Dear new Mom letters...now that Maddie is almost 5....I like the hopeful reassurance that they give future Moms of Down syndrome kiddos...because the truth is when you get a diagnosis like "your baby is positive for trisomy 21" there really is no "right" way of dealing with it...there is just how ever the new Mom feels...thats it...I do not think a letter would have helped me...because I truly believed I was the only one that had ever felt this disappointment...maybe it is my nature to be self centered, selfish, immature...but it was how I felt...I hated everything about Maddie's extra chromosome...I found nothing in the beginning reassuring or comforting...I read the book that doctors give out called "Gifts"...I threw it out...It made me feel bad that I was not happy...it made me feel like a inferior woman because I could not just be ok with it...that's why I started blogging...for me...because no one in this world understood me and my sadness...I felt alone and isolated...I felt small and lonely because I had to make the decision if Maddie lives or dies...I had to be the vessel in which held the baby that people do not want...I was the one with the burden...and at the time I felt like I was the only one that felt this way...I was told to be happy and that someday I was going to be thankful...but in those dark days I could not see that...<br />
<br />
fast forward to Maddie's delivery...and the first time I touched, smelled, and saw Maddie...that was the day I said to myself -thank you...thank you for being the great vessel...thank you for being strong enough to give birth to this perfect child....and I also said thank you to my husband and doctors that made that moment possible...throughout her past 5 years of life....her milestones, her accomplishments, her becoming who she is today...I have never again thought about life being ok without her...I am thankful daily that she is my girl...Maddie is the reason I am the person I am today...that selfish me is gone...and it is because of Maddie that I truly understand fighting for something that is important...it is because of Maddie that I truly understand life is not fair and that it is not suppose to be...and that it truly is ok...it is because of Maddie that I want to live a full life with people that encourage our differences and cheer us on through the trials of being a special needs mom...because our life is what it is...our "normal" is a village of doctors, therapists, case managers, and teachers helping parent our child along...it's really not a big deal....but it is....and that is ok...what I am trying to say to the new Mom out there...is that it is ok to be pissed and it is ok to be sad and it's ok to mourn the child you thought you were having....and it's just ok...your journey may be different then the one you dreamed...but being a mother to a extra chromosome is exciting, challenging, hopeful,rewarding and not just plain vanilla! Parenting Maddie is not about Down syndrome...it's about a perfect little girl that will show you how life should be lived...without judgement, boundaries, preconceived notions of what's "normal" and safe...<br />
<br />
I can't tell you everything is going to be ok...but I can tell you that in this big world of Down syndrome parents we will love your child and see all that your child can offer and we will value it...we will cry with you and give virtual high fives when your child rolls over, eats with a fork, stands up, walks, talks, hugs, says I love you, goes to school and becomes who they are...with no judgement on the road it took to get them there...<br />
<br />
So to future Moms out there of kiddos with the extra chromosome...you are not alone...someday maybe you will find your peace or already have....and if you do...tell me how! So I can learn...because I still have challenging days and bad days...but mostly I have great days because Maddie is alive and I get to know her better everyday...lucky us! And most of all I really enjoy the Dear future Mom letters and how great parenting Maddie is and how much better it is going to get...because sharing is caring!</div>
Anonymoushttp://www.blogger.com/profile/06551567304485458524noreply@blogger.com6tag:blogger.com,1999:blog-3825000868976601610.post-39800819154148386852014-02-24T12:20:00.003-08:002014-02-24T12:22:07.892-08:00Decisions decisions...<div dir="ltr" style="text-align: left;" trbidi="on">
I have been a little stumped lately...you would think I could put it out here on the blogosphere and let go..I usually can...that's why I blog to release myself...I am not one for disclaimers as in your going to be offended and I really do love my daughter...but I have taken a self pledge to not apologize...I think as women that's what we do...we say sorry for everything...not looking perfect all the time...not having the best behaved children...having a well lived in house...or even having a opinion...a couple months ago I commented on a blog and it went viral because a women didn't like my opinion...that is just not how I role..I like debate ... I also like teaching my kid to think for themselves in all aspects of life...I do not tell them to believe in anything or everything...they get to decide for themselves...and that includes Maddie...so with all that; here is why I have not blogged in ages...because I am going against the modern Down syndrome parent advocate push...we are putting Maddie into a FLS room for her elementary career...I know I can hear the "say what's", why?? FLS means functional life skills...I think that is self explanatory...I know many out there want their children to be in full inclusion...but I have a expert in my back pocket...and we defer to him on all things with Maddie...why? Because he has worked with many people with Down syndrome for many years and he has also raised a child born with Down syndrome...and this is what he suggests...why? Because it's not a race to get Maddie to learn her abc's or 123's teaching Maddie is a marathon...and it takes more people then one classroom teacher...with the FLS room Maddie has a low child to adult ratio...why not a aide? One word -dependence...I do not want Maddie dependent on one person for anything...I want her to think for herself...I want her to learn like she needs to...not how 18 other kiddos do...also the one on one aide here in Wyoming does not have any real training...not specifically teaching children with Down syndrome...but her FLS teacher does...so the fit for Maddie works...do we still have to fight...of course they just don't give out speech, OT, PT etc...most important the school and classroom want her...and that is important...Maddie is verbal but not to the extent that she can tell me if she is being hurt and who....so I rely on people to tell me about her day...I need to trust these people completely...and I cannot expect them to watch my child plus 18 other children and expect to get a good report...is Maddie ready for kindergarden...nope...she is not...not even close...but we have over stayed our welcome at her preschool...why? Because they do not know how to teach Maddie...they try...but really Maddie needs more and different instruction, cues, environment...is Maddie more alike...in some things yes...but not in her learning style -she is different...and that is ok...Maddie thinks for herself and has to be redirected and reminded...Maddie is Maddie...she is loud, sassy, and thinks she already knows everything...and it's ok for her not to become the cookie cutter learner or student...Max is not...he is his own person and I love that about both my kiddos...it will serve them both equally well...Maddie has a bright future ahead of her and I accept that she is different then the typical anyone...I am not going to sit back and pretend that life with Maddie is amazing all the time...I am not going to pretend that her being the smallest and the cutest doesn't get to me still...because it does...Maddie is just a kid that needs more...and the best...so guess what I found the best in our town and I am fighting tooth and nail to get her in...it is not a sure bet that she will be accepted...they do a lottery draw to determine the school your child attends..but I have name dropped, called, emailed, introduced, and reminded that I want Maddie to have the best...so cross our fingers she gets in...or I am not sure what we will do...</div>
Anonymoushttp://www.blogger.com/profile/06551567304485458524noreply@blogger.com8tag:blogger.com,1999:blog-3825000868976601610.post-66329694562120291712013-12-09T12:09:00.001-08:002013-12-09T12:09:51.754-08:00One week...<div dir="ltr" style="text-align: left;" trbidi="on">
One long week...Maddie can be challenging at times...in a way I have never experienced...the things she does are just different and so unexpected...Chad has been gone all week traveling and it seems that when he is away is the time she really out does herself for mischief...on Tuesday Maddie decided to hand me her poop at 3 am in morning...was not expecting this not all...she has been refusing to poop on the potty and will only poop squatted...not sure if it makes it easier or it is just a Maddie thing...so we say let's go get cleaned up after the transfer of poop from her hand to mine...putting the poop in its real home the toilet, the clothes go in the washing machine, then washing the hands and finally checking to make sure there is no more lost turds...I know I am living the dream...so this morning I went to begin some laundry and found turds in the washing machine...i suppose she was just getting clean...right! On Wednesday I woke up to Maddie screaming and banging on her bedroom door...she locked it...she was locked in her room at 6 am in the morning and I tried to remain calm...i tried to knock it down with a good shoulder push but ended up using a hatchet to make a hole in the door and unlock the door...I was saving her...right...yes -after I was thinking correctly I am sure I could have gotten it unlocked without drastic measures...but I was saving my princess...and it was 6 am in morning....on Thursday I received the dreaded email that they have had the worst week ever with Maddie at school...that she has been taking toys from friends hands and running away...yes this is the stage that Maddie is in...she likes to take and then giggle and have you chase her...I get that she can't do this...so I talked with her about it...and I have been dealing with this at home for awhile now...but it is a stage all children go through...but I am not sure it constitutes to the worst week ever...I think if other children understood Maddie and what she was saying and playing they could be more understanding and help the situation...I get it...it's a Maddie issue...but so age appropriate at 18 months not 4 years old...I get it...it's not cute any more...at least at her conferences next week I will know that not everything will be good...On Friday at Walmart Maddie decided she needed to puke...let me tell you she really does not puke...she likes to get her head all the way in the toilet sometimes with her hair touching water and coughs...yes her hands all over the toilet...she has been doing this since she was sick with the pukes...now she has continued and we cannot get her to stop it...so there she is head down in a Walmart toilet...there is not enough antibacterial for that...we left and showered immediately...Saturday we went to a birthday party and she took down a unsuspecting girl from behind...the girl was in a fancy princess dress and Maddie took her down from behind...to the ground...it was WWE right there in the lobby of the movie theater...in front of her mother of course...good times and apologizes all around...how do you teach a stranger to fight back and put Maddie in her place while apologizing and disciplining your daughter for being a pint sized bully...not well let me tell you...I just rolled with it and told chad to apologize again to the mother since he knows her...I have to admit I am ready for the week to end...and know that years from now I will look back and laugh...or drink...</div>
Anonymoushttp://www.blogger.com/profile/06551567304485458524noreply@blogger.com4tag:blogger.com,1999:blog-3825000868976601610.post-85413717967247023842013-11-25T08:09:00.002-08:002013-11-25T08:09:30.025-08:00BeeBee...<div dir="ltr" style="text-align: left;" trbidi="on">
BeeBee is how Maddie refers to her baby doll...this doll is one of the most important items in our family...in fact I almost feel guilty in referring to this well loved baby doll as a item...something that could be thrown away or replaced...this baby has been with Maddie since the beginning...when I found out about the extra chromosome I bought nothing for her...I was so consumed with just trying to keep myself sane that I did not want to fuss about anything including bedding, clothes, toys, nothing...we were not sure Maddie would live...we were not sure of much and I did not want any reminders of her if she was to pass...and then one day near the time I was to deliver Maddie I went to my favorite shop here in town...Country Charm...a small local store that has meaning to me...and I bought a blanket for her...a pink silk and fuzzy one...it was perfect...Maddie was born and the blanket was placed with her from the moment she was born and is still in her bed today...so when we came home from Denver I had this strong urge to get Maddie a doll...not clothes or a bed....I had to find the perfect baby...I wanted one that looked like Maddie...one that she would love and keep her safe like I had when I was a child...so we looked all over the Internet, Denver, and then I found it at a locally owned toy store and it was perfect...the hair...the eyes...the smell...perfect...Maddie has had this baby since she was a baby and it has been through every hospital stay, every vacation, every night of sleep...this baby has been to DC and back...it often goes to therapy and camp and even the lake...every morning you can hear Maddie saying good morning to BeeBee...if she puts baby down and returns she always greets baby with a Hi BeeBee a hug and kiss...it is the first thing she seeks out when she returns from school...this baby has seen it all and has been thrown up and washed more times then I can count and still has the smell of when it was first placed in Maddie's crib...it is not something I will try to replace or take away...it is not something I want her to grow out of...the baby is a huge part of the family that even Max is careful to keep a watchful eye on it so it is not forgotten...the blanket and the doll mean more then a monetary value...the blanket was bought to wrap my baby in no matter the outcome....the baby was purchased to protect my baby and always give comfort...as Maddie has gotten older her baby has learned to dress it self, go potty on the potty, dance, do treatments with her and love to be a perfect sidekick to my girl...<br />
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Anonymoushttp://www.blogger.com/profile/06551567304485458524noreply@blogger.com2tag:blogger.com,1999:blog-3825000868976601610.post-90379522890432102292013-11-20T12:00:00.000-08:002013-11-20T12:00:17.677-08:00What does therapy look like????<div dir="ltr" style="text-align: left;" trbidi="on">
What does Maddie's intensive therapy look like...Maddie has therapy at school and then privately...in school she receives speech, OT, and PT...3 times a week at various times and in various settings...sometimes in the classroom along side her classmates and sometimes pull outs...but her private therapy is what takes the cake and why we have seen a huge improvement with Maddie in skills and speech...Maddie goes to ACM Monday - Friday for an average of 6 hours per day...here is some of the examples of therapy that she is exposed to weekly:<br />
-Real world therapy this means she goes into the community and participates in everyday things such as grocery shopping, department store shopping including dressing rooms, going to the store like hobby lobby with the list and getting the items to perform the activity, sitting and ordering and eating in a restaurant, how to act in public by walking, holding hands, talking with people who talk with her, exposure to life in general.<br />
-Field trips this is anything from the movies to pumpkin patch, llama farm, airport, mountain, pottery by you, park, pedicures, you name it they will or have already done it!<br />
-Maddie receives feeding therapy everyday at ACM she eats family style with the staff and kiddos...learning to chew, try new things, she helps make her own lunch everyday, washes hands, uses utensils, cleans up after self, etc.<br />
-there is breakout one on one therapy in speech, OT, PT this is filled with expectations and goals that Maddie will meet...this is them pushing her along and making sure she is ready to enter school and life<br />
-group activities this is where Maddie is with other kiddos and has organized games, activites, play and receives guidance from staff and sometimes therapists to work on needs of all the kiddos...<br />
The ACM staff is amazing and they work with Maddie and us closely to make sure Maddie is getting what she needs from her day to be successful in life...<br />
<br />
This is a typical week for Maddie without more therapy...we would have not seen the growth for Maddie...again if I could turn back what I know now...I would push for more speech earlier...because as a society we put your worth on what you can offer others...Maddie has to be able to communicate her needs as well as reciprocate the needs and wants from others...through this I have discovered that being practical with Maddie has been good for my outlook for our future...setting Maddie up to fail because of my ego only hurts Maddie and my heart....asking others for help with Maddie's development is now our reality...the best thing we could do for her...</div>
Anonymoushttp://www.blogger.com/profile/06551567304485458524noreply@blogger.com0tag:blogger.com,1999:blog-3825000868976601610.post-23548688325587369822013-11-11T12:50:00.001-08:002013-11-11T12:50:36.302-08:00Update of sorts...<div dir="ltr" style="text-align: left;" trbidi="on">
I suppose this is a update of what's been going on with our busy growing girl!<br />
<br />
Academically Maddie goes to preschool Monday thru Thursday for 2.5 hours...she has speech, pt and ot 3 times per week...we like the preschool setting because it gets her ready for a school environment...lining up, drinking fountains, schedules, teachers, and daily expectations...after her day at preschool she is bussed to her intensive therapy place...it is truly amazing she receives one on one to small group therapy all the rest of the day working on speech, ot, and pt...she goes out in the community and receives therapy by going to stores or going to a museum...even eating at restaurants and how to eat and act properly...she even swims weekly and focuses on how to swim/breathe and speech and of course lots of play! I tend to mother or you could say baby Maddie to much...so they push me along and have potty trained her and encouraged her be more independent...always reminding me that Maddie is a child first...because of this intense schedule Maddie is doing amazing with her speech, writing and endurance...Maddie is still amazing us everyday with her knowledge and spunk for life...also with this is a struggle of what we want for Maddie...and what is reality...We want Maddie to be mainstreamed into school...but as time goes by and we see Maddie for Maddie And we understand that may not be the best route for Maddie...only time will tell and we have a year before we have to a make that decision...but for new mamas out there my only advice would start intense therapy sooner not later and work on speech...your child will run!<br />
<br />
Maddie's health....well is that not the million dollar question! Maddie is in pretty good health for Maddie...her esophagus has stayed open for 1 year...this is huge! It feels like a lifetime ago we were fighting this battle...but we traded in the esophagus issues for trachea and lung issues...she still receives vest, nebulizer, and steroid treatments 2x daily...this helps with the excess mucus...Maddie caught something a month ago and we are still trying to get it killed! So we are on antibiotics probably throughout the winter to help with the mucus in her lungs...of course this is a concern for us but it is manageable at the moment...Maddie is still on oxygen at night...but she hates it and rarely keeps it on...her last sleep study came back that instead of stoping breathing 11 times an hour after her tonsils and adenoids came out she only stops breathing 4 times per hour...this is a huge improvement...but the oxygen will stay put...Maddie still is having thyroid issues with stabilizing her numbers...but I hear this is typical with youngsters...Maddie is also still on her biotin for her 20 nail dystrophy and has not lost anymore nails and they have stop peeling off...and in big news her hair is starting to grow! Yeah for progress!<br />
<br />
Maddie's diet...this has been a full family affair! We have all changed the way we eat for the better...and are regularly being active together...going to the park....or even just dancing around the house....we have switched to 1% milk and only 2 glasses per day...she is back to baby food vegetables and some fruits...I need her to get the nutrients but the girl will not eat a green bean or anything green for that matter! She will eat lettuce but only smothered in ranch! Speaking of ranch we make our own low fat and so Maddie can still enjoy dipping! The biggest change for Maddie's eating is her lunches...before I would take the easy route and pack her canned ravioli or spaghetti ...not anymore! She gets quesadillas with low fat cheese...home made pizza with low fat cheese and a crust of the whole grain crust bread...if I pack spaghetti it is home made...I have also started packing her Meat with cookie cutters to make it fun! her lunches no longer have milk or juice but water....this change has helped with her acid reflux and her tummy size! But I have taken a stand and I am not submitting my meal plans to her doctors...I figure they can trust me to do right by my daughter!<br />
<br />
So here we are mid November and me and Maddie are just looking forward to Thanksgiving and the upcoming Elmo show! </div>
Anonymoushttp://www.blogger.com/profile/06551567304485458524noreply@blogger.com5tag:blogger.com,1999:blog-3825000868976601610.post-6966048607380606312013-10-02T12:03:00.002-07:002013-10-02T12:03:39.151-07:00Pushing "stuff"<div dir="ltr" style="text-align: left;" trbidi="on">
I had an illusion of what life would be with Maddie...and then I had no expectation of her...I did this to protect my heart...I lied all the time trying to make myself believe that someday...my little girl would do everything I wanted her to do...selfish...of course...but what mother does not put that on their daughter...want more for her daughter then she had herself...what mother does not have an glorified perception of what their daughter will look like, act like, become...I did...I dreamt of being a mother to a daughter since I was a daughter...when I played dolls they were always little girls...me and my dolls matched...my grandmother would make coats, clothes to match mine...I was and still am a girls girl...so Maddie came about...and I was and at times still am lost...but along the way there has been a constant that has always held my hopes together...to always make me look forward to what may lay ahead....and that are therapists...yep the people that came in my home every week without question or judgement...the ones that Maddie spends her days with today and almost everyday...teachers...Maddie's therapists /teachers have always been the best...we are very lucky to have the best our community has to offer and I would say they are as good as any other place...Maddie's first therapist saved my life as a mother...along the way she told me and showed me how to teach Maddie...that I should be proud of my girl -not embarrassed...yes most mothers probably did this on their own...but I was so mad that I was Maddie's mom that I forgot how to mother...and I was very depressed and just pissed...but Maddie's therapists always told me to get it together or pointed out all the "stuff" she was doing...and through out the years this still rings true...I can get sad or upset that Maddie is not doing "stuff" but they are always there to remind me that Maddie can do "stuff"...lots of "stuff"...I know in the beginning of this journey who I thought were key players in Maddie's life...and I was wrong on most accounts...her therapists/teachers are the most important figures in Maddie's life...why....because they are unbiased, educated, full of knowledge....and most of all hope...they have seen a child with Down syndrome do "stuff"...so their expectations can be high and relentless...I still to this day want to mother Maddie to make up for the lousy job I did early on in her life...so as the therapists push Maddie they push me to...and that is always good...for me in my girl!</div>
Anonymoushttp://www.blogger.com/profile/06551567304485458524noreply@blogger.com2tag:blogger.com,1999:blog-3825000868976601610.post-16751537649663262702013-10-01T11:39:00.000-07:002013-10-01T11:39:18.096-07:00BuSY MADDIE...<div dir="ltr" style="text-align: left;" trbidi="on">
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Anonymoushttp://www.blogger.com/profile/06551567304485458524noreply@blogger.com3tag:blogger.com,1999:blog-3825000868976601610.post-28422330461818964822013-09-12T12:08:00.003-07:002013-09-12T12:08:33.779-07:00Chunky..,WhAT...<div dir="ltr" style="text-align: left;" trbidi="on">
Yesterday we were in Denver for Maddie's stomach emptying study and Areodigestive clinic...I knew Maddie's stomach does not empty "normal" so I was not surprised that it came back affirmative for slow emptying of the stomach...this is due to nerves to the stomach that are damaged or not working properly...so this can cause bloating, nausea, vomiting, or feeling full after eating a small amount of food...Maddie was diagnosed with this at birth...and she was on medication for it for 3 years and then we took her off...because the drug to treat this can be unsafe.."but not really" as the doctors say...they say that it really should not have a black box warning...but here is where it gets good! They do not want to treat it because Maddie is obese...yes you read that right! Maddie is 99% for weight and 50% for height on the Ds chart and has been put on a low fat diet...at the ripe age of 4! WHAT...I was not as pleasant as I should have been with this news...I am pissed...first because 4 months ago she was to little and scrawny as they put it...to now she is obese! (Gained 5 pounds in 4 months!) I have a food diary I have to fill out and send to the doctor...I have a calorie counter for her and sample meal plans! For real...Maddie is 4 years old...I know that Down syndrome kiddos can have issues with weight...hell I have issues with weight...but my eating disorder happened in high school not preschool! Sometimes I wish people would stop putting Maddie under a microscope...We go to this clinic to see GI, Pulmonary, ENT, Speech, Feeding, OT and now a dietician...I really only signed up for the ENT, Pulmonary and GI...the others just tagged along making suggestions along the way...I really would stop going to the doctors if Maddie didn't have the lung and esophagus issues...but now here we are and I know it is my fault...that is what pisses me off the most...I am really not pissed at them for telling me the truth...I am mad at myself for not doing better at feeding Maddie...I know that I am the one; the only one that provides her food...and the weight she has gained is because I have let her have an opinion on what she will eat and when she eats...I let her lead me...because for the first 3.5 years of life she was on baby food and Greek yogurt...I am mad because I have created this and I hope I am not to late to change it! Oh well maybe at the end of this Maddie can be the new spokesperson for weight watchers! (I am only kidding!)</div>
Anonymoushttp://www.blogger.com/profile/06551567304485458524noreply@blogger.com7tag:blogger.com,1999:blog-3825000868976601610.post-66074501919224906542013-09-09T08:11:00.000-07:002013-09-09T08:11:19.365-07:00Emotional relapse<div dir="ltr" style="text-align: left;" trbidi="on">
Wyoming Buddy Walk organizers have a lot to be desired...it was my first walk and i do not get it...i do not get the point...at all...to raise awareness for Down syndrome? if that is the case where was the state newspaper, TV, radio...people other then families with members that were born with Down syndrome...gathering in the park by the University and dancing to music for hours is not what i call a friend-raiser...it is perpetuating a stereo type that people born with Down syndrome are happy and love music and to dance...oh sorry I forgot the games from the 1980's...if this is a walk...then lets walk the capitol and demand change for our state waiver system...or how Down syndrome is referred to by a state senator as a disease...encouraging people first language...during the event people at the microphone keep referring to Down syndrome as special -that is condescending...Maddie is not special...are they referencing that my son Max is not special? because he is just typical...seriously I do not want my daughter to be a perpetual child or special...she already has a HUGE ego...I want her to live a good productive life...you know i-n-d-e-p-e-n-d-e-n-t-l-y...after the dancing and 6 carnival games and lets not for get the big purple gorilla the walk began to the University Football stadium for lunch and a game...that would be great if my child was not 4 years old and has absolutely no interest in sitting in the hot sun and watch football...but i do concede it is great for alumni and older kids and people...<br />
<br />
where does the $$$$ go when we raise $$$ for the Wyoming Down syndrome association?? if you are raising money for a cause...then how about touting the details...how you help new parents muddle through there diagnosis to possible services and/or resources that may be available to them...you now the services you did not provide for me...at all...and when questioned about it you said but we hold a buddy walk and we do not provide services to families that deliver in Colorado...or does the money go to research that helps to encourage the abortion of my child...instead of going to the education on how to teach my child...maybe the money could go to lobbying to our local legislators for the Wyoming Waiver system that actually helps families in Wyoming...providing lifesaving services...<br />
<br />
the disconnect between the Wyoming Down syndrome association and the actual families is mind blowing...I have wrote the senator that has no people first language skills unless it has to do with millionaires and oil/coal moguls...i have also made my frustration known to the Wyoming Down sydnrome association...<br />
<br />
But this is were my frustration boils...why do i care...why does it matter...why do i fight...there is no change that will ever be good enough...unless there is not a need for a Buddy Walk...because society finally sees my child as nothing special and different...my real issue...my daughter was born with Down syndrome and no matter how you spin it or how I have grown with becoming more comfortable with it...I still am very much afraid...and sad....yesterday was a bad day...and hopefully today I will begin to build back up my bubble of bliss and everything will become comfortable again...I cannot explain my fear of the future...staying in the present is truly my coping mechanism that works for me...<br />
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Anonymoushttp://www.blogger.com/profile/06551567304485458524noreply@blogger.com10tag:blogger.com,1999:blog-3825000868976601610.post-31943331966293110292013-09-05T12:31:00.001-07:002013-09-05T12:31:40.125-07:00Somersaults...<div dir="ltr" style="text-align: left;" trbidi="on">
Confusion is how I feel...I think..I am not sure how to feel really...and I am not sure I feel anything...this is the deal...Maddie started another year of tumbling...yeah! Right? But there is a but...I am seeing the gap and it is becoming big, glaring, more...Maddie can do all of the tumbles like the other kiddos...but what she cannot do is sit and wait for a turn...stop touching other kids...talk to them like a 4 year old typically does...no she is called the baby...and the other girls do not necessarily want to sit by the "baby"... It hurts...it is so frustrating to have the other kids sitting and wait appropriately and Maddie doing summersaults down the mat or kissing the little boy that dares to be near her...I know Maddie can do better...I know that this is very important for her...this teaches her so much more then balance and cartwheels...this teaches her about living beside another person...appropriate touch...taking turns, standing in lines and following directions...the teacher is amazing and she is bringing in a helper to help out with the flow of the class...I watch Maddie fall and get up with a smile...I watch her try so hard and want to be a good friend...she just forgets sometimes...I wonder what the other parents think...I know I should not go there...I know Maddie has every right to be there...I know it is as good for there child as it is for Maddie to be in that class...even if Maddie takes up more of the teachers time...I just do not want to hear the comments...or get the looks from the moms that give me a nasty look when they see it is my child that is the naughty one...the thing is this is the beginning or the continuation of my quest to have Maddie be fully submerged into a 'normal' class setting....in a typical life...for some unknown reason I still think people will not notice that Maddie is Maddie...that she will show them that she is just like there kid...with a little more personality...I try to tell myself all the other kids will act like Maddie in time...Maddie does not act naughty just because it is the first day...she shows her true colors on the first day of class...there is no honeymoon with Maddie it is just all out stubbornness and self will...someday I will reflect back on this and think how not a big deal it is...I will have to worry about her education and fair and equal rights...I know this is the small stuff...but again it just gets to me...I like keeping my Maddie is a protective box...but I know her and I still need to grow...</div>
Anonymoushttp://www.blogger.com/profile/06551567304485458524noreply@blogger.com3tag:blogger.com,1999:blog-3825000868976601610.post-17209088703051216592013-08-26T12:59:00.003-07:002013-08-26T12:59:20.267-07:00Blurred Lines...<div dir="ltr" style="text-align: left;" trbidi="on">
To explain it is not naked sexy women and men dancing with animals...it is how I see Maddie and her life outside our family...I think Maddie needs more...more then what we are able to give her...so with that more I have to give her over for the weekdays to professionals that know...my ego is shot...I want to be that person that can...I want to know how...but I am not...I coddle Maddie...I seriously think she is so cute and perfect that I do not correct much of what she does (monster i have created) if she wants held -I hold her...if she wants me to feed her -I feed her...if she wants anything I move the earth to comply...I do this because I do the same for Max...yes it has bitten me in the ass...yes my children are very spoiled...but they are mine...and I own it...<br />
<br />
Maddie is 4 years old and is completly scheduled from the time she gets up to the time she goes to bed...structured scheduled....and with that Maddie thrives and grows...I am not that person...I am a lets see what the day feels like and then find the adventure...But Maddie must be ready for kindergarden...I want to see her in a full inclusion classroom setting...with limited help from others...so for this to happen I think this is the best route to get there...<br />
<br />
Maddie is not in 'daycare'....she is in preschool and then goes to a intensive therapy program that is everyday...pt,ot, and speech included...and you know what -she loves it...and she also loves coming home with me...but everyday when she wakes up she wants to go to her place...where the therapists love her and teach her and expect her to do great things...and I am trying to muddle my way my own ego...I will get there...because I can put Maddie ahead of my own self need for cuddles...so the structure that Maddie has become so accustomed to should be interesting on our annual family Yellowstone trip! I hope the bears and wolves appreciate Maddie's howls...</div>
Anonymoushttp://www.blogger.com/profile/06551567304485458524noreply@blogger.com2tag:blogger.com,1999:blog-3825000868976601610.post-11728033560441525362013-08-22T11:56:00.000-07:002013-08-22T11:56:16.488-07:00Monster...<div dir="ltr" style="text-align: left;" trbidi="on">
So my break -was short lived! and the thought I was cured from blogging apparently did not take...we have a PROBLEM! Maddie is a bully...no other way to put it...she is socially not nice...she does not use her words...even though kiddos will tell her that god gave her words so use them! She hits, pushes, and screams in kids faces...it does not matter if she knows the kids or not...if a child does anything to Maddie...she gets her justice...she self advocates very well...just not socially acceptable...so to say I am not nervous about this upcoming school year is a lie...if her schedule and predictability is not in place...they will have major issues...Maddie is not just a I am going to push you down and walk away kind of kid...if she does not see tears...she will then push them again and yell at them...until they understand that you do not mess with this pint size fire cracker...Maddie comes off as nice and laid back -until...at home she is getting out of hand...today I resorted to timeout...more for me then her...until recently I could redirect her...interest her in other things...not now...now she knows how to get self perceived justice for herself...she is even beginning to fight me and Chad...she throws food at us at dinner if she does not like it...she hits me when I do not do something she wants in a right now fashion...all I can say is she is in the ferocious fours! I hope we all survive...any suggestions???? </div>
Anonymoushttp://www.blogger.com/profile/06551567304485458524noreply@blogger.com4tag:blogger.com,1999:blog-3825000868976601610.post-79182228815800671932013-08-19T11:54:00.001-07:002013-08-19T11:54:17.111-07:00Friends...<div dir="ltr" style="text-align: left;" trbidi="on">
Can my blog be my best friend? it acts like a BFF?...it listens...it comments and gives me great advice...tells me to get over myself...and always stands by my side....and never judges me (mostly)...however, i am thinking I do not need to project my personal issues onto it anymore...I no longer want to have others understand what it is like for our family...because our family is like yours...I no longer get my panties in a bind when I hear hurtful things...I just get pissed and tell the person how to correct it...I no longer want to share everything about our life...I want to keep it a secret almost...because its mine...in my mind Down syndrome is still a big deal....i just do not need to make others feel how big of a impacted it is on our family...hospitals are our vacation destination...and there is no use fighting something that we cannot change...in the past i wanted others to feel my pain of how it is having to go to Denver to hospitals every month...but i cannot make others understand what it is like...this is a members only club...of course I still struggle with the what ifs....but my coping mechanisms have changed...instead of writing about them...I eternalize them...I try to find out solutions for them...I read other moms blogs and I learn from them...Of course i read blogs daily to keep up with our friends...i care what is happening and i truly learn something every time i read a post...I will be forever in this blogs debt...it gave me back -me and for that we will be forever friends...</div>
Anonymoushttp://www.blogger.com/profile/06551567304485458524noreply@blogger.com3tag:blogger.com,1999:blog-3825000868976601610.post-50274326097314442312013-07-16T18:41:00.002-07:002013-07-16T18:41:41.943-07:00Mucho Maddie...<div dir="ltr" style="text-align: left;" trbidi="on">
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj14XHHeO6cloR9kD6PPAtpieMxhDuESSZj-57ZzPJDe5nSMhqrIYbAkMKXhxMX_B6NazOX_85Rxxr7uwagMbv_JbZMrAbp50IchlpDNw_m4nse1ViBIbTg7N291b6900J5My4WSHhUnA0/s1600/13+-+1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj14XHHeO6cloR9kD6PPAtpieMxhDuESSZj-57ZzPJDe5nSMhqrIYbAkMKXhxMX_B6NazOX_85Rxxr7uwagMbv_JbZMrAbp50IchlpDNw_m4nse1ViBIbTg7N291b6900J5My4WSHhUnA0/s320/13+-+1.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hey friend! CaLL mE MaYBe?</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEP7CJqfb5SW9HlYtMeFGiwXGmc5QVEMZYZxTIkKFucYXQrONa4SqFUaWub-NJbh1NUfSGDt6jy27n4KjSJmMIIe6h7CBUsxYlHCEgD01RwM5NCrtM7AT0Rc2MsWj8iv-N7zS26w1xx48/s1600/13+-+2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEP7CJqfb5SW9HlYtMeFGiwXGmc5QVEMZYZxTIkKFucYXQrONa4SqFUaWub-NJbh1NUfSGDt6jy27n4KjSJmMIIe6h7CBUsxYlHCEgD01RwM5NCrtM7AT0Rc2MsWj8iv-N7zS26w1xx48/s320/13+-+2.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">BFF's waiting to jet away!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigVSpLgZiOMbhGMuZX0K2_WZcJu1GLcjchhqkUI3Cgbn9jQz6eMkrOya0eXjyLELmv6RjyS9USssbR4ZhgNqtoNjfLpAhgJxFugWKY-egpV7EdBp1yz5oFxnvkqsIOh7ouAPOKB_adS-0/s1600/13+-+3.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigVSpLgZiOMbhGMuZX0K2_WZcJu1GLcjchhqkUI3Cgbn9jQz6eMkrOya0eXjyLELmv6RjyS9USssbR4ZhgNqtoNjfLpAhgJxFugWKY-egpV7EdBp1yz5oFxnvkqsIOh7ouAPOKB_adS-0/s320/13+-+3.jpg" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">its been a day!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEqd3L5AwTGPM9vkYAturdns9yjG0TgFbFAfN-kzo8eyPXoFqlWl8LFrJJI8IOxf0YWzv6Ql9A93L8ZLuODuguPX5MlxJOBvqw-ZAzYI5sFeDvNeZHp6DfabI8OE3XGYJN0MVCN6ZYBY4/s1600/13+-+4.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEqd3L5AwTGPM9vkYAturdns9yjG0TgFbFAfN-kzo8eyPXoFqlWl8LFrJJI8IOxf0YWzv6Ql9A93L8ZLuODuguPX5MlxJOBvqw-ZAzYI5sFeDvNeZHp6DfabI8OE3XGYJN0MVCN6ZYBY4/s320/13+-+4.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">new glasses!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMwdgM8cx4OT3ZMyBHvKomvxU9LkbzsLmfZ8yXS8d6ACaUUHCmgmNBXbTq-lwgo1iFGU4Q5oder7g-YvogiiUd4xzY1L329MNZxbk4osiEU07maUPxM00Iz-qj4K3eNlF6bTXXo77lho0/s1600/13+-+5.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMwdgM8cx4OT3ZMyBHvKomvxU9LkbzsLmfZ8yXS8d6ACaUUHCmgmNBXbTq-lwgo1iFGU4Q5oder7g-YvogiiUd4xzY1L329MNZxbk4osiEU07maUPxM00Iz-qj4K3eNlF6bTXXo77lho0/s320/13+-+5.jpg" width="238" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Powder RiVer let'er Buck!</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIXJu1t1RN5ypmKXV0DQyzoAkLzAdFapKLRlx5FzkuJ6_TnN9QmDszJ2Ij9p9L3m6O9MRLk7wXvZQyR02TmWN3IWlL5AzI845K2-maL089a7SEymsc_H2s2n5miTz8FI0zkYHJtgvJTV0/s1600/13+-+6.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIXJu1t1RN5ypmKXV0DQyzoAkLzAdFapKLRlx5FzkuJ6_TnN9QmDszJ2Ij9p9L3m6O9MRLk7wXvZQyR02TmWN3IWlL5AzI845K2-maL089a7SEymsc_H2s2n5miTz8FI0zkYHJtgvJTV0/s320/13+-+6.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Thanx Uncle Josh!</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqx6NeAN1B55rjng0ZJ5pgzawzhdvFkdodkhTMVpZ54Mk7xLebRVQT7EnGGAMR-iIox-QqZJfCja7xJybNffECCN-u3_RNK2Xz4z5dhdJAstOIHjeaRZueeJmDzs37JjX-3F9zQiabp8U/s1600/13+-+7.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqx6NeAN1B55rjng0ZJ5pgzawzhdvFkdodkhTMVpZ54Mk7xLebRVQT7EnGGAMR-iIox-QqZJfCja7xJybNffECCN-u3_RNK2Xz4z5dhdJAstOIHjeaRZueeJmDzs37JjX-3F9zQiabp8U/s320/13+-+7.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">when Mom is away!</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="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_lLpS0yaZtZUmnTVaO8fDUNQecIk0eRJQM6kVxksXMcseKFTmLB_2FAdm46ALOieIwQfziejPb1pmaaLnhyKa7XRw1-T9wwwArg3e-AMhN2JUtezYKpORGoEWA0aAnJ11JWYONp3LE5s/s1600/13+-+8.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_lLpS0yaZtZUmnTVaO8fDUNQecIk0eRJQM6kVxksXMcseKFTmLB_2FAdm46ALOieIwQfziejPb1pmaaLnhyKa7XRw1-T9wwwArg3e-AMhN2JUtezYKpORGoEWA0aAnJ11JWYONp3LE5s/s320/13+-+8.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Catch n Realease</td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUwzQQfPwE6ID2E9XpE6ZVqPtPrvQqPeHaEBd8vsfcYZZZr5UO2Wke7KcnfaRh3AISFCfTiLWatsWX6hq9xfzLzPTZl04egB4em7VSpQ-D5FrpCj4fz0T7oCGNP2-jpqLaxVC1ZlkyBQ0/s1600/13+-+10.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUwzQQfPwE6ID2E9XpE6ZVqPtPrvQqPeHaEBd8vsfcYZZZr5UO2Wke7KcnfaRh3AISFCfTiLWatsWX6hq9xfzLzPTZl04egB4em7VSpQ-D5FrpCj4fz0T7oCGNP2-jpqLaxVC1ZlkyBQ0/s320/13+-+10.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I will take it from here!<br />
<br />
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaLMTUXHlW0s-JUrHCeU7FYOAJcAYjyRcY6GUYCsf7YgdQZ8lDnKgj3jM0LHoWVc9Jls4oMgc1oFwjHnTa3rR-2po1ZFLjkcE_XjY0B49QbzV2nfh5Y1YWL85BGDa32o01e8INXBGMaE8/s1600/13+-+1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaLMTUXHlW0s-JUrHCeU7FYOAJcAYjyRcY6GUYCsf7YgdQZ8lDnKgj3jM0LHoWVc9Jls4oMgc1oFwjHnTa3rR-2po1ZFLjkcE_XjY0B49QbzV2nfh5Y1YWL85BGDa32o01e8INXBGMaE8/s320/13+-+1.jpg" width="320" /></a></div>
I am READY!!<br />
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxOpJ2oyPTfaij_hO6hMVQwAvjxFODlhIJ6N1y7XVvqgc_TxDLCOA73q7iNzzjY5V7EGUIbzPJq2SuPsjXv-mS0JOmfYYd2ffbro9eJ8THrKCCZcYYRGHMhyphenhyphenQsg7YHlMmIe-NGxFZJrso/s1600/13+-+2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="238" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxOpJ2oyPTfaij_hO6hMVQwAvjxFODlhIJ6N1y7XVvqgc_TxDLCOA73q7iNzzjY5V7EGUIbzPJq2SuPsjXv-mS0JOmfYYd2ffbro9eJ8THrKCCZcYYRGHMhyphenhyphenQsg7YHlMmIe-NGxFZJrso/s320/13+-+2.jpg" width="320" /></a></div>
concentration and pretty painting! </td></tr>
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Anonymoushttp://www.blogger.com/profile/06551567304485458524noreply@blogger.com4tag:blogger.com,1999:blog-3825000868976601610.post-64134238301844628902013-07-01T06:13:00.003-07:002013-07-01T06:13:34.879-07:00Happy Camper...<div dir="ltr" style="text-align: left;" trbidi="on">
Maddie has had the BEST summer ever! she and Max are attending a all inclusive Day Camp...the counselors are AMAZING...this summer Maddie has exploded with words, confidence, and independence...seriously this has been the most wonderful unexpected experience for our children...Max loves going and playing with ALL the kiddos of various ages and developmental abilities...the unexpected part is Maddie finding her own community that she will grow with for life...everyday I get pix of what Maddie and Max are doing and learning..it warms my heart to know that my kiddos are learning, growing, and enjoying...here are some of the pix I get throughout the day...enjoy!<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmYPNZVEFNlmpVGHd2m5Mmx5T8g5SZki3ExE8aLiqT19PZL2JxZqETcpoztwl_AKp-FoPG8QdKMj2zVCMU7tvmAsvlVwvx0jlXlWVCRNE2PRysz6xiX2EDzBdT0sIJlPp6gb5xjoLITk0/s868/13+-+1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="238" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmYPNZVEFNlmpVGHd2m5Mmx5T8g5SZki3ExE8aLiqT19PZL2JxZqETcpoztwl_AKp-FoPG8QdKMj2zVCMU7tvmAsvlVwvx0jlXlWVCRNE2PRysz6xiX2EDzBdT0sIJlPp6gb5xjoLITk0/s320/13+-+1.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Max leading the way for Maddie and her friend..</td></tr>
</tbody></table>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKeIqQb4X2jcr0Y-EAHxrYFGDR8QbqwKg2eAXtRtE-JoPJGcFp8FnvTqPbm6s67A7MBBJcpC4FHq8CPgnn0PY_5Tcaqi6uq4hJqzE7QFHV3F7asPPjTFUEMjZ1X5bivy-ibwr7ez_V2qY/s506/13+-+2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKeIqQb4X2jcr0Y-EAHxrYFGDR8QbqwKg2eAXtRtE-JoPJGcFp8FnvTqPbm6s67A7MBBJcpC4FHq8CPgnn0PY_5Tcaqi6uq4hJqzE7QFHV3F7asPPjTFUEMjZ1X5bivy-ibwr7ez_V2qY/s320/13+-+2.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">we are in Wyoming!</td></tr>
</tbody></table>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJBiHX5ukCspRUbwmiHCgBHcpNHZzNeoCz4TSyPOjVeWGX2BlNCybQn5Xvfftxv_uDTBM-gikUhoY7fP4PgZUjiIPan4vYq0o6-4EH-4hjX2YJRPEG-UOKikr0uivCI4yR6Pmz9Sdqx4s/s675/13+-+3.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJBiHX5ukCspRUbwmiHCgBHcpNHZzNeoCz4TSyPOjVeWGX2BlNCybQn5Xvfftxv_uDTBM-gikUhoY7fP4PgZUjiIPan4vYq0o6-4EH-4hjX2YJRPEG-UOKikr0uivCI4yR6Pmz9Sdqx4s/s320/13+-+3.jpg" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">at the movies!</td></tr>
</tbody></table>
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDqk9TFFJ-8fb0jD6Ikko_dBkFufgQKHnZbIzwbqBc8Ffg-jj3qMS_BA2PTRGt2MohInzj1BWyZwEIjI833jnaf7L1q1EUG00-8Hy5mssMKKz9Ts1TDGPcojzoVu38BEoJ2EfmJWNNs1I/s506/13+-+4.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDqk9TFFJ-8fb0jD6Ikko_dBkFufgQKHnZbIzwbqBc8Ffg-jj3qMS_BA2PTRGt2MohInzj1BWyZwEIjI833jnaf7L1q1EUG00-8Hy5mssMKKz9Ts1TDGPcojzoVu38BEoJ2EfmJWNNs1I/s320/13+-+4.jpg" width="320" /></a></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpXERc-_FzvDufrsVj6OOoCq3dESICo1RacEQuT_kaEdUTPixvvkxbYB2a4LRLVdI-Qna3M7ogE9Cw3erqjee8MOnsGQGaecE7ZkKJeXJgs05X7bg5WMCu5BAww01Clu0vxoqh1faruDI/s506/13+-+5.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpXERc-_FzvDufrsVj6OOoCq3dESICo1RacEQuT_kaEdUTPixvvkxbYB2a4LRLVdI-Qna3M7ogE9Cw3erqjee8MOnsGQGaecE7ZkKJeXJgs05X7bg5WMCu5BAww01Clu0vxoqh1faruDI/s320/13+-+5.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">bowling...but Maddie thinks it is a hanging toy!</td></tr>
</tbody></table>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWvkAQ2gT1tQE8xWQriEThhQbJq7zAKK9HbJsrDxr570DsodkftV0IkKIfCv4KzXnxk7Aq_rascMjN_UHMD-1sndo39pbeVY2eOOZe6fC1jMuil8I27WTta1YoZR-lu0TbC_iQbcpOy7E/s506/13+-+6.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWvkAQ2gT1tQE8xWQriEThhQbJq7zAKK9HbJsrDxr570DsodkftV0IkKIfCv4KzXnxk7Aq_rascMjN_UHMD-1sndo39pbeVY2eOOZe6fC1jMuil8I27WTta1YoZR-lu0TbC_iQbcpOy7E/s320/13+-+6.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">sand table..</td></tr>
</tbody></table>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBcOyh3oDYSesO0WlMJCqdT_Q4tOiArn9bDUZzRiKQJKjF1kCSd3JYMudhux1Icu3ielwX7lb8ayidhzDp9EUzpseyCukNgEcl-P0jAGjQWLN-epX6UmeGdphxkbmZD2byWVzrIO6-eJg/s506/13+-+7.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBcOyh3oDYSesO0WlMJCqdT_Q4tOiArn9bDUZzRiKQJKjF1kCSd3JYMudhux1Icu3ielwX7lb8ayidhzDp9EUzpseyCukNgEcl-P0jAGjQWLN-epX6UmeGdphxkbmZD2byWVzrIO6-eJg/s320/13+-+7.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">tennis anyone!</td></tr>
</tbody></table>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibZ00B1gb1nolQd4w0waTMx3MZRfZT88svN6i8PY-Fu1vV0HSSAT6llnZQybksrT98-CYWnb_6pk92BxyPqaJSA4dW9pTYsaA3N3z_mMaaIGu9xTeI1qiD0U6ZDpk6cktDV3Nzky8neH8/s400/13+-+8.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibZ00B1gb1nolQd4w0waTMx3MZRfZT88svN6i8PY-Fu1vV0HSSAT6llnZQybksrT98-CYWnb_6pk92BxyPqaJSA4dW9pTYsaA3N3z_mMaaIGu9xTeI1qiD0U6ZDpk6cktDV3Nzky8neH8/s320/13+-+8.jpg" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I bite!</td></tr>
</tbody></table>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4C8k_6IM2VAPbxPV9wWKQUT6OyLz5cNqSH38dvlKPHHt94p25AU7bVbHBhMgYozI1A9mybS3zkSWQ_aTiqlkXFB_qPk5Ca8CosZBDZ92XvID5ooln_Js8n9-XTlRHSBiUy9RwQkfMLr0/s506/13+-+9.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4C8k_6IM2VAPbxPV9wWKQUT6OyLz5cNqSH38dvlKPHHt94p25AU7bVbHBhMgYozI1A9mybS3zkSWQ_aTiqlkXFB_qPk5Ca8CosZBDZ92XvID5ooln_Js8n9-XTlRHSBiUy9RwQkfMLr0/s320/13+-+9.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">peek-a-boo</td></tr>
</tbody></table>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5c-zclvwOpYFUOlj9uf-w6YuBDsMOGPwKfRGyl5fX0_Ok_a1FO0-4sreg_ikaFNh6ZTv-wkC250HNfbJqh0PFVv05bOuWzx8Vg-c-rOAguiuZZG-_d7qYNxkMcVGshVh1_ghj36Q9i-s/s1046/13+-+11.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5c-zclvwOpYFUOlj9uf-w6YuBDsMOGPwKfRGyl5fX0_Ok_a1FO0-4sreg_ikaFNh6ZTv-wkC250HNfbJqh0PFVv05bOuWzx8Vg-c-rOAguiuZZG-_d7qYNxkMcVGshVh1_ghj36Q9i-s/s320/13+-+11.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">llama llama time..</td></tr>
</tbody></table>
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpt_cEfLJZTl8LONyYfikp96JigFOGRf9L8BxxxyBaMw2P8IZYixmAV2KQB4L8Z5dSW2Q1LCeOwxj9ddVEUfHf-AJcPp5QvTTiUiFq067iKoQziSn17JiyVk6JrdE0SHQwQD77QoSqpp0/s506/13+-+12.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpt_cEfLJZTl8LONyYfikp96JigFOGRf9L8BxxxyBaMw2P8IZYixmAV2KQB4L8Z5dSW2Q1LCeOwxj9ddVEUfHf-AJcPp5QvTTiUiFq067iKoQziSn17JiyVk6JrdE0SHQwQD77QoSqpp0/s320/13+-+12.jpg" width="320" /></a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvjaV0PvR8v66ISkAqtnpGlgELHUd9F0DSSJsEU4Lth7gUe80RE_0-8Xu3qWzxi4S4B2gTYLjH4kixTDDt3WSYnSJOSSinyUKBUZ7bX7YlVH0d_eiyVJUY-JIYNv9uY9YNXm0xxPHGX3I/s512/13+-+13.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvjaV0PvR8v66ISkAqtnpGlgELHUd9F0DSSJsEU4Lth7gUe80RE_0-8Xu3qWzxi4S4B2gTYLjH4kixTDDt3WSYnSJOSSinyUKBUZ7bX7YlVH0d_eiyVJUY-JIYNv9uY9YNXm0xxPHGX3I/s320/13+-+13.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">marshmallow toothpick structures</td></tr>
</tbody></table>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsDM-RJvRe2F86UelQt5WUt0qOnh4hNnbGcfxjR5qa4SJLvYW85p88Bn_N65BHKttuNr6G12c61RqSINkh5l35FtKdSutpki3oX15IpqqHBkeLlOnfMeS0s2zJiKQiXHRmn-krRGLEbbc/s506/13+-+14.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsDM-RJvRe2F86UelQt5WUt0qOnh4hNnbGcfxjR5qa4SJLvYW85p88Bn_N65BHKttuNr6G12c61RqSINkh5l35FtKdSutpki3oX15IpqqHBkeLlOnfMeS0s2zJiKQiXHRmn-krRGLEbbc/s320/13+-+14.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">can you hear me now?</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_xUUnL1hm3r-G3Kr-SZjn8i5IKa-hVIYnp9Xncnty4PMqRRBUV-hiJhaITm0ATOYmYScWZ3pP_4u6xuRLJf4aMVYcZ9gFELg1C89vKjElIZ5MQIb-VnrQXGYGaxIOh6eQ6KdAjWbtY7k/s506/13+-+15.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_xUUnL1hm3r-G3Kr-SZjn8i5IKa-hVIYnp9Xncnty4PMqRRBUV-hiJhaITm0ATOYmYScWZ3pP_4u6xuRLJf4aMVYcZ9gFELg1C89vKjElIZ5MQIb-VnrQXGYGaxIOh6eQ6KdAjWbtY7k/s320/13+-+15.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">look out!</td></tr>
</tbody></table>
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<tr><td class="tr-caption" style="text-align: center;">Maddie loves older girls!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Flashlight tag! I am ready!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">snack time..</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvCIp9YxOgQtzC9vqt16zkyRl32iieuhpuvV70upcOe2W5MfrE_6IG8-67kL-TQ9cETslKCuAe1XEVOlqDY690bCany1Yb1ubrzqcYl_dRczpOZtOqEOuohCPi7Qu2qNZ4pzMeQiCK6LM/s1046/IMG951438.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvCIp9YxOgQtzC9vqt16zkyRl32iieuhpuvV70upcOe2W5MfrE_6IG8-67kL-TQ9cETslKCuAe1XEVOlqDY690bCany1Yb1ubrzqcYl_dRczpOZtOqEOuohCPi7Qu2qNZ4pzMeQiCK6LM/s320/IMG951438.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jumping Maddie</td></tr>
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Anonymoushttp://www.blogger.com/profile/06551567304485458524noreply@blogger.com3tag:blogger.com,1999:blog-3825000868976601610.post-45649002008610571512013-06-24T05:34:00.003-07:002013-06-24T05:34:21.843-07:00once upon a time...<div dir="ltr" style="text-align: left;" trbidi="on">
<i>How it all began...when I wrote this I was just starting this unknown journey...it is very raw...but I think an important story to remember...for the new mother that just found out...maybe just maybe she (you) can find something to connect with in my story...</i><br />
<br />
August 17, 2008 we went to Rapid City SD to Reptile Gardens. Our 2
year old son is a fanatic about everything nature! My husband and I
discussed throughout out the day/year about having another child. I just
could not believe how perfect Max is, so beautiful, so smart, so funny,
such a huge personality. When we got home there was a perfect ending to
our day. We put our perfect son to bed and well one thing lead to
another and a baby was conceived. I knew immediately I was pregnant. I
knew we were ready; I had prepared my body I stopped taking the pill a
year and half before, I was taking <span class="blsp-spelling-error" id="SPELLING_ERROR_0">folic</span>
acid, I was exercising regularly, I was eating as much hormone free
foods as possible, I limited all caffeine and never drank alcohol. So I
bought an economy sized pregnancy test pack and began testing; the test
was POSITIVE! Of course I am one of these people that has to take
multiple tests to be sure all 15 were positive! I was pregnant with
another perfect person and I was so excited but very <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">scared</span>
more scared then my first pregnancy. I told my husband that we were
pregnant and he hugged and kissed me with love, joy and excitement! We
choose not to tell anyone without confirmation from the doctor. I made
my appointment with the doctor and it was official I was pregnant. At 8
weeks pregnant I had my first ultra sound. I remember the doctor saying
this is a strong heart beat you have nothing to worry about. I hung on
to those words for months how strong the heart was beating. I went in
for normal check ups and everything was normal no sick, no worries, just
anticipating the babies first movements.<br />
<br />
It was time
for a routine 5 month ultra sound it was in January 2009 and we decided
to take our 3 year old to meet his new sibling. It was an experience! He
stole the show with his comments and enthusiasm he had everyone in the
room laughing. We did not want to know the sex of the baby we loved the
surprise. At the end the doctor lightly mentioned that she did not see a
stomach bubble and would like to do another ultra sound in a month.
Both my husband and I did not think much about this. I mentioned this to
friends and they reassured me that if she is looking in a month it must
be nothing to worry about. I did no research during this time which is
unlike me but I just did not think it was a big deal. The ultra sound
day came February 17, 2009 I told my husband not to come that it was
nothing and that there was no worries besides I was feeling the baby
move and it was very reassuring. In the waiting room I remember getting
really excited that they had a 3-D ultra sound machine I really wanted
those pictures. I joked with the nurse then the doctor and laughed at my
son and how much of a personality my son is. As I lay on the table we
went through all the anatomy of the baby her assuring me things looked
good and the doctor got quiet and she changed her tone and her
conversation to me. She started frantically going to the heart, to the
brain, measuring the bones and talking in medical terminology. I froze
and I knew then something was wrong with my perfect baby. I tried to
hide the tears and be strong but it was impossible. All I remember about
her comments are no stomach bubble, Tracheal Esophageal Fistula (<span class="blsp-spelling-error" id="SPELLING_ERROR_2">TEF</span>) and Esophageal <span class="blsp-spelling-error" id="SPELLING_ERROR_3">Atresia</span> (EA), <span class="blsp-spelling-error" id="SPELLING_ERROR_4">Down's</span>
Syndrome and when is it good for you to go to Denver to see
specialists. As I cried she hugged me, the nurse hugged me and the
office people could not look me in the eye. It was the worst day, the
saddest day so I thought. I called my husband and I was a mess I could
not get to the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_5">Internet</span>
fast enough to learn about everything that was just being said me. I
could not believe that my little baby was going to be possibly born
without an attached Esophagus. How would she eat or how will she
survive. My husband called the doctor to get more details and she
assured him like she did me that the risk for Down's Syndrome is very
low and that we needed to see the specialists to see about the <span class="blsp-spelling-error" id="SPELLING_ERROR_6">TEF</span>/EA that this is a very rare occurrence 1 in 4,000 live births. So we made the appointment for the following week.<br />
<br />
We
went to Denver as a family during this time I could not let go of my 3
year old son it was like I had to keep him close to protect him from
what was growing inside me. On February 21, 2009 we saw the specialist
and still there was no bubble in the stomach. Then the doctor said to us
he would like to do an amniocentesis to rule out Down’s syndrome. He
only gave us a 20 percent chance of having a Down’s syndrome child. I
was reeling I could not believe what was going on it was like I detached
that day from the baby growing inside me. The doctor said we will see
you in a month to be drained of amniotic fluid because the baby could
not swallow he explained that I would fill up with amniotic fluid
dangerous levels that could put me in to preterm labor this is
technically called <span class="blsp-spelling-error" id="SPELLING_ERROR_7">polyhydraimnios</span>.
Again I did not realize the challenge with the baby not being able to
swallow there own pee how huge I would get, how uncomfortable I was
looking 9 months pregnant and I was about 28 weeks. Also, during our
next visit we were to visit with the pediatric surgeon.<br />
<br />
On February 23, 2009 2:10 pm it was confirmed I was carrying a child with <span class="blsp-spelling-error" id="SPELLING_ERROR_8">trisomy</span>
21; Down’s syndrome and asked if I would like to terminate the
pregnancy. 92% of child diagnosed with Down’s syndrome are terminated.
All I could do was ask if the baby was a boy or a girl I needed to know
this information. It was girl he said. I threw myself on the ground I
was hysterical and alone how was I going to tell my husband this
terrible news. The moment I stopped touching my belly I wanted nothing
more to do with this pregnancy or this baby. My husband got home from
work and I told him the news. I cried so hard I thought I was dying. I
think something in me that day did die I buried the notion that I was
having a perfect child a perfect little girl. I could not picture this
baby as a little girl; a baby I pictured her as a teenager or an adult. I
grieved that I was never going to plan a wedding with my little girl,
that I could never relate to her emotionally or socially, that she would
never be the little girl that I expected or wanted. I did not want this
thing growing inside me. I hated her. I hated myself for feeling this
way. I could not believe my own reaction to the diagnoses. I thought I
was stronger then this, better then this, I thought I was open minded a
free spirit that I was up to anything. I am a glass half full
personality. Then I turned my grief to my son; what had I done to him
how and why does he have to live with a special needs person and have
attention always going to his sister instead of to him. To be referred
to as the boy that has the Down’s syndrome sister. I was just sad and
there was no going back.<br />
<br />
I did think about terminating
this pregnancy I thought long and hard about this. It was crazy how I
did not think my husband should really have an opinion on this topic. I
really thought that this was my decision to make and solely mine. As it
got harder to make this decision of course I wanted his feedback I was
sure he would say lets get rid of this baby it is just too much for all
of us. To my surprise and dismay my husband was fine with this news. He
took about 24 hours and then bounced back and could not wait for the
challenge of this little girl he was excited. During this time the
little girl growing inside me was very active. I mean she was so active I
felt like she was beating me up, she was actually hurting me she was
already feisty! I realized that she was speaking to me she was trying to
tell me that I am alive and you are MY MOM so either rise up to the
challenge or get the fuck out of my way because I am coming no matter
what.<br />
<br />
All the while I was sick of people telling me that it would
be fine, that she was coming to special parents, or the “right parents”
you see I am a daycare provider and my husband is a teacher. I guess
that meant that we were up to this challenge. I beg to differ on this.
Everyone just kept on saying Down’s syndrome children are nice and sweet
and always happy. Like that was supposed to make me feel better that
she would be living with me forever. I even had people say well at least
your child is alive and not dead or that you did not loose her in
miscarriage. Really that is the best they can do I hated all those
comments. The worst comment was probably when a lady who I did not know
said congratulations on having a child with Down’s syndrome. I came
unglued with this comment it was one of the most insensitive comments I
have ever heard. I remember discussing the hard decision of if I should
continue with the pregnancy and my friend being revolted by notion of
abortion. She actually said you would never do that; that is awful I
told her not to comment on this until she was pregnant and had the news
that she was having a Down’s syndrome baby. For a month at least I was
in a deep depression and angry about the situation that I had put my
family in. I refused all help and refused to have a baby shower. The
results from the amino and blood work confirmed that my husband and I
were at no greater risk to produce a Down’s syndrome child than any
other couple at our age. When I went to the doctor I wanted to tell
every pregnant person in the waiting room that they had no worries on
having a Down’s syndrome child because I was the statistic 1 in 733.<br />
<br />
I
went in to preterm labor at 30 weeks it sucked they gave me shots and
was put on medicine to stop the contractions. The medicine made me
thirsty, nausea, and very shaky and will be on them for the duration of
the pregnancy. But in the hospital that night I realized how much I
wanted my baby that this was my little girl. I remember screaming at the
nurse that if she shoves that thing up my vagina much further and
ruptures my water my baby will die so to get another nurse. That was the
first time since hearing all the news that I referred to her as my
baby, my little girl. I wanted her and I wanted her to live. That day I
touch my belly and started to massage her and love her like she was
mine. She is mine and her name is Maddox (Maddie) Rose and she is my
perfect little girl.<br />
<br />
I read about all things Down’s
syndrome and saw I was completely wrong on all my views and assumptions
of children with Down’s syndrome. In the meantime we went to Denver for
our second visit I was drained of amniotic fluid 2 liters. It hurt but
it felt good afterward I was as big a 37 week pregnant person instead of
being just 30 weeks. We also met with the pediatric surgeon. She is a
young aspiring surgeon only 5 years experience pretty new but has great
doctors to learn and mentor from in her practice and will be only
assisting on the surgery. Tracheal Esophageal Fistula (<span class="blsp-spelling-error" id="SPELLING_ERROR_9">TEF</span>) and Esophageal <span class="blsp-spelling-error" id="SPELLING_ERROR_10">Atresia</span> (EA) was explained to us and did not sound as daunting as everything I had read on the <span class="blsp-spelling-error" id="SPELLING_ERROR_11">internet</span>.
She said if this is the only this wrong with our little girl she will
have a smooth recovery. She explained how the surgery would be done with
a scope, that only 2 places in the United States perform this surgery
with a scope. We feel very confident with our little girl’s surgeons. Of
course we are hoping for a <span class="blsp-spelling-error" id="SPELLING_ERROR_12">TEF</span> Fistula (obstruction) instead of a full EA <span class="blsp-spelling-error" id="SPELLING_ERROR_13">Atresia</span> (Open gap between stomach and esophagus). The hardest part of the <span class="blsp-spelling-error" id="SPELLING_ERROR_14">TEF</span>/EA is the unknown of what she has fully until she is born. She will have a series of test done a <span class="blsp-spelling-error" id="SPELLING_ERROR_15">VACTERL</span> which stands for V-vertebral, A-anal <span class="blsp-spelling-error" id="SPELLING_ERROR_16">imperforate</span>, C-cardiac, T-<span class="blsp-spelling-error" id="SPELLING_ERROR_17">teteflea</span>, R-renal (kidney), L-limb to determine everything that needs to be fixed. <span class="blsp-spelling-error" id="SPELLING_ERROR_18">TEF</span>/EA will be determined by a simple x-ray. Then she will have surgery within the first few days of life to hopefully correct the <span class="blsp-spelling-error" id="SPELLING_ERROR_19">TEF</span>/EA.
She will suffer from severe indigestion or acid reflux for most of her
life that will be helped with medication. With Down’s syndrome children a
heart defect is a big concern we are hoping for the best, her heart has
always been strong. A huge thing for me was she may not have a butt
hole. I know this is crazy but I was freaked out about this. The doctor
explained this is a simple surgery and has a very good success rate.<br />
<br />
Some
good and surprising news is that I will be able to breast feed with a
pump and after surgery hopefully I will get her to latch on. After that
visit with all the doctors it was four hours later and we were ready to
go home. Both of us were encouraged with the news of little Maddie and
that she was gaining weight and as perfect as could be! Of course there
was a snow storm in March that stuck us in Cheyenne for another 24
hours. It was par for the course!<br />
<br />
I did not realize
after that trip to Denver my life would be filled with Doctors visits. I
see the doctor 2 times a week for an ultra sound and <span class="blsp-spelling-error" id="SPELLING_ERROR_20">NST</span>
non-stress tests. By now I am sick of ultra sounds and the pictures
that come with them. I do have to admit the 3-D and 4-D ultrasounds rock
and I have seen my little girl and she is the most beautiful little
girl I have ever seen.<br />
<br />
I knew I had gotten full of fluid again the
contractions were coming stronger and more often. The Doctor told me I
had to be drained within 7 days! So off I went to Denver to get drained.
And another April snow storm! They took 2 more liters off me. This time
it hurt and I was tired; very tired and sore. There was not much relief
and I was contracting pretty hard and consistently after the procedure.
Again I got shots to stop the contractions. But there was the best news
of all! My little Maddie had a partial bubble in her tummy. Something
we have never seen before. I can not tell you the joy and excitement; it
is the best bubble I have ever seen. It still means she has <span class="blsp-spelling-error" id="SPELLING_ERROR_21">TEF</span>/EA but at least there is hope for <span class="blsp-spelling-error" id="SPELLING_ERROR_22">TEF</span>.
During this visit she was tested for lung development of course it was
not good news. We have gotten used to this. She scored a 31 she needed
to be above a 55. The doctors assured me that this is miner and that she
will most likely just need a ventilator.<br />
<br />
I am
continually monitored twice a week but there is an end in sight I will
deliver May 13, 2009 in Denver. I am so excited and nervous and scared <span class="blsp-spelling-error" id="SPELLING_ERROR_23">shitless</span>!
I finally bought her a blanket and some clothes. I prepared her bed and
have a car seat. I am ready for her and I am up to the challenge of
being her mom. I have specialists coming in once a week to work with her
until she is 3 years old, then she will attend their preschool and then
she will be placed in main stream public school. I know that early
intervention is best for child with Down’s syndrome. I am doing
everything I can to make sure she has the best. I will continue my in
home day care for her stimulation and development.<br />
<br />
I am
at a good place emotionally however; I have good and bad days and then
really bad days! I have experienced people’s ignorance and prejudice
towards my child and she is not even here yet. I know I need to remember
you cannot fix stupid and that is what we are if we do not try to
understand the unknown of being a parent of a child with Down’s
syndrome.<br />
<br />
<i>Trip to Denver</i><br />
It is time to go to Denver and have
Maddox I have packed for the family and myself knowing I have forgotten
almost everything! We arrive to drop <span class="blsp-spelling-error" id="SPELLING_ERROR_0"><span class="blsp-spelling-error" id="SPELLING_ERROR_0">Maximus</span></span> off at his Aunt’s and his Grandma will assist in taking care of the great <span class="blsp-spelling-error" id="SPELLING_ERROR_1"><span class="blsp-spelling-error" id="SPELLING_ERROR_1">Maximus</span></span>
while we are in the hospital. Naturally things are not going as I have
planned Chad is working most of the day and I am overly nervous! We
arrive in Cheyenne to drop off Max. We are
not in a good frame of mind and we are as nervous as we have ever been.
It is the first time we are leaving Max over night and he will stay for 6
days an eternity in Max time! We stop in <span class="blsp-spelling-error" id="SPELLING_ERROR_2"><span class="blsp-spelling-error" id="SPELLING_ERROR_2">Loveland</span></span>
for our last meal and all we can do is talk about our kids and what the
future may bring. We stay in a hotel that I cannot remember the name
of. That morning I shower I do not recall much of <span class="blsp-spelling-error" id="SPELLING_ERROR_3">anything</span>
else but walking down to the lobby for Chad to get some breakfast and
watching the people go by and thinking that they have no idea what is
going on in my life or with the life I hold inside me.<br />
<br />
<i>Birth</i><br />
Finally
we arrive at the hospital Chad is having a hard time with knowing in 2
short hours he will see his wife cut open again and have a baby that may
or may not survive. We are joking around trying to keep it light and
not on topic of what is lying before us. Soon the nurse gets me hooked
up to monitors and doctors start coming to explain the days events and
what will be happening. Before I know it I am walking to a “sterile”
hospital surgery room. Finally we get to the room and I am lying there
butt naked from the chest down. The anesthesiologist starts injecting me
and I was becoming numb from the toes to the chest. Even my nipples
were erect and numb it was a very strange feeling. Dr. <span class="blsp-spelling-error" id="SPELLING_ERROR_4"><span class="blsp-spelling-error" id="SPELLING_ERROR_3">Perrecco</span></span>
makes his entrance and tells the nurse to prep me again he was not
impressed with how she had done the prepping. They did and I knew he was
in charge and everything was going to be <span class="blsp-spelling-error" id="SPELLING_ERROR_5"><span class="blsp-spelling-error" id="SPELLING_ERROR_4">ok</span></span>
and I was not going to die! Soon the room filled with doctors and
nurses and everyone introduced themselves including Maddox doctor. Her
name was Dr. Lawrence the most important person I thought in the room
and I would not forget her face. Soon I was cut open and Dr. <span class="blsp-spelling-error" id="SPELLING_ERROR_6"><span class="blsp-spelling-error" id="SPELLING_ERROR_5">Perrecco</span></span> says he sees a gush of black hair then Maddox swims up towards my chest and Dr. <span class="blsp-spelling-error" id="SPELLING_ERROR_7"><span class="blsp-spelling-error" id="SPELLING_ERROR_6">Perrecco</span></span> has to push her down and out! She came out screaming and pissed. Dr. <span class="blsp-spelling-error" id="SPELLING_ERROR_8"><span class="blsp-spelling-error" id="SPELLING_ERROR_7">Perrecco</span></span>
said “are you sure this is a baby with Downs? She has great muscle
tone”. And with that they performed some tests on her in the delivery
room to the right of me. I can remember Chad looking at me and saying it
is EA I just cried I thought she really could die. I prepared myself
for this but I always held out the hope that she would survive. Dr.
Lawrence brought Maddox over to see me; I was able to hold her for about
one minute. She was so beautiful I could not get over her black hair it
was almost overwhelming. I noticed right away that she was frothing at
the mouth; I looked at Dr. Lawrence and said she has <span class="blsp-spelling-error" id="SPELLING_ERROR_9"><span class="blsp-spelling-error" id="SPELLING_ERROR_8">TEF</span></span> to. And with that Dr. Lawrence and her team took her away to begin the <span class="blsp-spelling-error" id="SPELLING_ERROR_10"><span class="blsp-spelling-error" id="SPELLING_ERROR_9">VACTRAL</span></span>.<br />
<br />
<i><span class="blsp-spelling-corrected" id="SPELLING_ERROR_11">Diagnosis</span></i><br />
As
I was recovering Chad was with Maddox going through some of the tests. I
kept asking the nurse if she had seen Chad or if she heard anything
about my baby. She new nothing and she actually started getting
concerned about what was going on. She took me to my recovery room and
went off to see if she could find someone who new something about
Maddox. My dad came up to be there for me and he was a life saver; he
was there when I entered the recovery room and for <span class="blsp-spelling-error" id="SPELLING_ERROR_12">Maddox</span>
surgery. When the nurse found Chad he was ready to be away from doctors
poking and prodding his little girl. He confirmed that she had an (<span class="blsp-spelling-error" id="SPELLING_ERROR_13"><span class="blsp-spelling-error" id="SPELLING_ERROR_10">ASD</span></span>)
a 5 mm hole in her heart but that it was nothing to worry about that it
was the good hole. He said that everyone is born with an <span class="blsp-spelling-error" id="SPELLING_ERROR_14"><span class="blsp-spelling-error" id="SPELLING_ERROR_11">ASD</span></span>
and that in most people it closes with time. He said that Maddox was
crying hard and that would help close that hole. This was the best news
yet that we were getting answers that we were wondering about for months
with in a couple of hours of her being here. Dr. <span class="blsp-spelling-error" id="SPELLING_ERROR_15"><span class="blsp-spelling-error" id="SPELLING_ERROR_12">Shippman</span></span>
and Maddox’s anesthesiologist came busting into my room. I mean she was
running! She said “why did you not call me! I was clear across town
when I got the news I was doing the surgery!” Mind you this is 4 hours
after Maddox was born. They had determined no heart surgery was needed
and that they would repair the EA/<span class="blsp-spelling-error" id="SPELLING_ERROR_16"><span class="blsp-spelling-error" id="SPELLING_ERROR_13">TEF</span></span> with a scope. I think that this was Dr. <span class="blsp-spelling-error" id="SPELLING_ERROR_17"><span class="blsp-spelling-error" id="SPELLING_ERROR_14">Shippmans</span></span>
first repair alone and she was crazy excited! The anesthesiologist drew
pictures on how they would repair the EA which is the gap in the
esophagus; we still did not know how big it was but we new we would have
all the answers with in a couple of hours. This was relieving in a
weird way. 4 hours after Maddox was born she endured her first surgery
and 3 hours after that she was “fixed”. Maddox had a 2 cm gap in her
esophagus (EA) and a fistula between her esophagus and her trachea (<span class="blsp-spelling-error" id="SPELLING_ERROR_18"><span class="blsp-spelling-error" id="SPELLING_ERROR_15">TEF</span></span>). Dr. <span class="blsp-spelling-error" id="SPELLING_ERROR_19"><span class="blsp-spelling-error" id="SPELLING_ERROR_16">Shippman</span></span>
entered the room looking tired and proud of herself; she told us the
great news and what we could expect for the next 5 days. Maddox was not
to eat and could not be picked up. She would be sustained by fluids.
They would take her blood everyday to check what <span class="blsp-spelling-error" id="SPELLING_ERROR_20"><span class="blsp-spelling-error" id="SPELLING_ERROR_17">carbs</span></span>, proteins, fats, etc. needed to be supplemented for her to thrive.<br />
<br />
<span style="font-style: italic;">Maddox's Recovery</span><br />
Finally,
the nurse came in to my room and said I could go see Maddox I remember
it was dark out I was so excited and scared. I had to brace myself for
all her tubes and what she would look like. Chad wheeled me down to the <span class="blsp-spelling-error" id="SPELLING_ERROR_21"><span class="blsp-spelling-error" id="SPELLING_ERROR_18">NICU</span></span>.
It was a crazy place to be in I never thought I would be there. I never
could have imagined what it looked like the sounds, the smells, the
nurses and doctors and the babies the sick babies everywhere. Chad and I
got our badges to enter the <span class="blsp-spelling-error" id="SPELLING_ERROR_22"><span class="blsp-spelling-error" id="SPELLING_ERROR_19">NICU</span></span>
and made our way back to the last room on the left room number 4. There
she was Maddox Rose was lying there with nothing but a diaper, a hat
and tubes everywhere. The floor 3 <span class="blsp-spelling-error" id="SPELLING_ERROR_23"><span class="blsp-spelling-error" id="SPELLING_ERROR_20">NICU</span></span>
is a very loud place something I did not expect; there is always bells
and buzzers going off. You soon and very quickly learn what all the
sounds mean. But besides that there was my little girl she was so
beautiful, she was so cute, I loved her. All me and Chad could do was
look at her. We were not to touch her. We could talk to her but that was
it. It is very unnatural for parents not to touch there baby. We
learned very quickly that the nurses would answer most of question on
how to care for our baby. Most of the nurses were amazing and talented
they were teachers. But there was a few nurses that were <span class="blsp-spelling-corrected" id="SPELLING_ERROR_24">challenged</span> with working with parents one <span class="blsp-spelling-error" id="SPELLING_ERROR_25"><span class="blsp-spelling-error" id="SPELLING_ERROR_21">NICU</span></span>
nurse said to me “don’t worry you do not have to touch your child to
bond with her” I can say I was visualizing that I was beating the shit
out of her. The next morning 6:00 am my catheter was removed and I was
instructed to start walking I walked straight to the <span class="blsp-spelling-error" id="SPELLING_ERROR_26"><span class="blsp-spelling-error" id="SPELLING_ERROR_22">NICU</span></span>
to see Maddox I could not get there fast enough. My next 3 days was
learning about Maddox and what challenges lie ahead. The staff at the
hospital were incredible there were people to help with breast feeding,
social <span class="blsp-spelling-corrected" id="SPELLING_ERROR_27">security</span>
benefits, and how we were going to pay for all of this! They even gave
massages to women in the hospital it was great. I cannot explain the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_28">incredible</span> feeling of helplessness you feel when your child is in the <span class="blsp-spelling-error" id="SPELLING_ERROR_29"><span class="blsp-spelling-error" id="SPELLING_ERROR_23">NICU</span></span>. There are doctors and nurses that think there way to do things is the only way. <span class="blsp-spelling-corrected" id="SPELLING_ERROR_30">Literally</span>
depending on the nurse it will depend on how your baby is swaddled to
how they are fed. Some nurses encourage you to breastfeed some bottle
feed or even if you should be involved in the care times. Care times are
the feeding, changing diapers and taking your babies <span class="blsp-spelling-corrected" id="SPELLING_ERROR_31">temperature</span>.
But no matter what no one could have prepared me for leaving the
hospital with out her. This was the worst day! I cried the entire time
we where checking into the Ronald McDonald House. Chad had to fill out
the paper work and move us in. I was helpless. That night I just new I
had to buck up and get over myself! I also new <span class="blsp-spelling-error" id="SPELLING_ERROR_32"><span class="blsp-spelling-error" id="SPELLING_ERROR_24">Maximus</span></span> would be joining us and I needed to get things <span class="blsp-spelling-corrected" id="SPELLING_ERROR_33">together</span> for him. That Monday was a big day Maddox had her swallow test to see if the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_34">surgery</span> was done perfect and if there were any leaks in the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_35">esophagus</span> and if she would have to <span class="blsp-spelling-corrected" id="SPELLING_ERROR_36">re due</span> the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_37">surgery</span>. <span class="blsp-spelling-error" id="SPELLING_ERROR_38"><span class="blsp-spelling-error" id="SPELLING_ERROR_25">Maximus</span></span>
was coming to join us at the Ronald McDonald House I could not wait to
see him. By 3:00 pm Monday and 6 days after she was born we were told
she had a perfect fix and now she needed to heal. 5 minutes later <span class="blsp-spelling-error" id="SPELLING_ERROR_39"><span class="blsp-spelling-error" id="SPELLING_ERROR_26">Maximus</span></span>
came running off the elevator and he looked like he had aged a year! He
was no longer my baby he was my big boy with the best smile! <span class="blsp-spelling-error" id="SPELLING_ERROR_40"><span class="blsp-spelling-error" id="SPELLING_ERROR_27">Maximus</span></span> is truly beautiful I missed him so much. A routine soon followed Chad would take Max to <span class="blsp-spelling-error" id="SPELLING_ERROR_41">play dates all over Denver</span>
and I would visit Maddox. We would always come back together for dinner
at the Ronald McDonald house. I can not explain how cool the Ronald
McDonald house is; it child centered and made us feel so welcome. It
truly saved us <span class="blsp-spelling-corrected" id="SPELLING_ERROR_42">financially</span>. By Wednesday only one week after she was born she graduated to the 7<span class="blsp-spelling-error" id="SPELLING_ERROR_43"><span class="blsp-spelling-error" id="SPELLING_ERROR_28">th</span></span> floor <span class="blsp-spelling-error" id="SPELLING_ERROR_44"><span class="blsp-spelling-error" id="SPELLING_ERROR_29">NICU</span></span> this was the <span class="blsp-spelling-error" id="SPELLING_ERROR_45"><span class="blsp-spelling-error" id="SPELLING_ERROR_30">NICU</span></span>
that babies are released from the hospital to go home! One by one all
of the tubes were taken out. Pretty soon she was the only baby in the <span class="blsp-spelling-error" id="SPELLING_ERROR_46"><span class="blsp-spelling-error" id="SPELLING_ERROR_31">NICU</span></span> that had no tubes. I got to stay the night with her in the hospital <span class="blsp-spelling-corrected" id="SPELLING_ERROR_47">it was</span> amazing and very exciting. I did not sleep a wink! On day 13 I <span class="blsp-spelling-corrected" id="SPELLING_ERROR_48">received</span> a call from the <span class="blsp-spelling-error" id="SPELLING_ERROR_49"><span class="blsp-spelling-error" id="SPELLING_ERROR_32">NICU</span></span>
that they needed milk I rushed it over and the nurse told me we were going
to be released from the hospital. We were going home! I called Chad and
he began cleaning the room and packing. Maddox had to go through a
series of things to be released including a car seat check. She had to
sit in her car seat for 4 hours to see if she would survive! she did!
we were told that she would have to go home on oxygen and not to stop in
Cheyenne. It was finally time the room was cleaned and we checked out;
we went to the hospital to pick up our baby! The funniest thing happened
when Maddox was released from the hospital Max was playing with some
kiddos in the waiting room; I said "Max come meet your sister" and he
said "no he was playing"! Then he looked over and saw her in the car
seat he came running over and "said is this my sister; I love her"! It
was amazing! He then looked at Chad and said "can we team work her".
Which means can they do it together! So Chad and Max carried the car
seat with Maddie to the car. The next morning Max woke up and asked do I
still have my sister! YES!!<br />
<br />
<i><br /></i>
</div>
Anonymoushttp://www.blogger.com/profile/06551567304485458524noreply@blogger.com4tag:blogger.com,1999:blog-3825000868976601610.post-16090777710277166602013-06-18T11:49:00.003-07:002013-06-18T11:49:39.404-07:00Testy testy...<div dir="ltr" style="text-align: left;" trbidi="on">
The person i was 4 years ago is not who i am today...not even a hint of her really is in me...before i was delusional with a flighty personality...it was cute when i was young...or i thought it was...i never saw myself growing up or changing...who i was served me well...i got what i needed and used it...but then a ultra sound happened...and that day i died...in the beginning i thought this was the worst thing possible...me having to look at reality and not through my fairytale glasses...i struggled for a long time...probably to long...but the end result is not half bad....i am no longer ignorant...or selfish...and i could careless about people who continue to think my child is not equal...to them i will continue to fight and annoy,,,and hopefully one day make a difference...in my small world...<br />
<br />
so why the dramatics...because in the beginning of this long journey...i had a different opinion about the test..<br />
<br />
The test...if you have a child with Down syndrome you know the test I am referring to...if you don't...let me enlighten you...it is a blood test that tells you early on if you are having a child with extra chromosomes...we opted out of this test...not on a moral stance but on a I am invincible stance...I am not sure what I thought about the test before I had the no bubble ultra sound...but I know what I think of the test today...I think it is trying to eliminate a child like Maddie...maybe not to others but to me it is personal...Down syndrome is the only abnormality they test for prenatally and encourage to abort...or kill...which ever makes you sleep better at night...so me and Chad go rounds about this test...we argue...I research...I present why not...he presents why yes...it is just good family discussions and we always agree to disagree...the other night in one of round robin discussions...he said I would have wanted to know at 8 weeks pregnant if Maddie was going to be born with Down syndrome...this through me off the ledge...again...why...because for 4 months straight I cried myself to sleep...because my beautiful pregnancy was cut short...for 4 months I did not know the answer if my Maddie was goings to live or die...not because of Down syndrome...but her other health issues that came along with the extra chromosome...because for 4 months all I did was obsess over everything...because of the early diagnosis I had to begin the process of what if and knowing I have no power to change anything...I stopped loving my baby...I did...it was harsh and it was frustrating...the only reason for me the test was a good thing...was that we delivered in a hospital that could "fix" her when she was born...there was no separation from her...I knew what to expect in regards to surgeries and possible complications with her heart and esophagus...but on my heart and emotional side I wish I would have known at birth...so I could hold her and know that she was perfect...I know I would have still been heart broken...but I truly live in a dream like state...I like fairy tales and if I can prolong any happy ending I will...so if I could have waited and not been forced to make a decision on whether to kill my child or not...I think I would have been better off...when we found out everything health wise with Maddie we discussed a do not resuscitate on her...that is to something while pregnant I did not want to discuss...but we had to...or we thought we did...because if I was holding her and that issue came up...I would tell them to fight for her and if they could not "fix" her i would find someone who could...because holding Maddie is like holding perfection...<br />
<br />
My life today is better then before we had Maddie in it...I would have told you 4 years ago that was not possible and hated you for trying to change my mind...but today as I watch her grow and learn and be a very productive member of our society I know that Maddie does have a place in this world...</div>
Anonymoushttp://www.blogger.com/profile/06551567304485458524noreply@blogger.com4