Wednesday, August 6, 2014

Worry..

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...

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???

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...

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...

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...

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...

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"...

Wednesday, July 23, 2014

Terminology, Labels and Phrases

Terms used to describe my kid...and my other kid...

Ordinary - no special quality or interest; common

Normal - usual, common type, natural, regular, typical, conforming to the standard

Different - not alike in character or quality; unusual,  not ordinary

Special - a distinct or particular kind or character

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....

Maddox -sister, daughter
Maximus -brother, son
better yet for both of them -HUMAN...

Max is often described as smart or interesting...negative perhaps...
Maddie is described as special or different...negative perhaps...

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...

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...

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...

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...

"you are doing it right"

WHAT does that mean????

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"

soap box...perhaps!!



Monday, July 21, 2014

Eyes...

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!

Oh my mommy guilt!!

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...

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!

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...

The doctor turns to me and says "has anyone ever told you that Maddie has fuzzy retinas"

huh! What!! Um no! I start to laugh...because this is Maddie! In a nut shell...

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...

hence fuzzy retinas...

This is not optimal to say the least...am I relieved that it is not a tumor?? obviously...

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!!

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...

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...

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!!

Tuesday, April 1, 2014

Sshhh its a secret!

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...

kind of...

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..

and...

exactly...

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...

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...

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?

Tuesday, March 18, 2014

Dear Mom, it's Ok...

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...

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...

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...

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!

Monday, February 24, 2014

Decisions decisions...

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...

Monday, December 9, 2013

One week...

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...

Monday, November 25, 2013

BeeBee...

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...

Wednesday, November 20, 2013

What does therapy look like????

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:
-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.
-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!
-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.
-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
-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...
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...

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...

Monday, November 11, 2013

Update of sorts...

I suppose this is a update of what's been going on with our busy growing girl!

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!

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!

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!

So here we are mid November and me and Maddie are just looking forward to Thanksgiving and the upcoming Elmo show! 

Wednesday, October 2, 2013

Pushing "stuff"

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!