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! 

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!

BuSY MADDIE...

Chunky..,WhAT...

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!)

Emotional relapse

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...

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...

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...

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...

Somersaults...

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...

Blurred Lines...

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...

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...

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...

Monster...

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???? 

Friends...

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...

Mucho Maddie...

Hey friend! CaLL mE MaYBe?

BFF's waiting to jet away!

its been a day!

new glasses!

Powder RiVer let'er Buck!

Thanx Uncle Josh!

when Mom is away!

Catch n Realease

I will take it from here!

 I am READY!!

 concentration and pretty painting!

Happy Camper...

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!

Max leading the way for Maddie and her friend..

we are in Wyoming!

at the movies!

bowling...but Maddie thinks it is a hanging toy!

sand table..

tennis anyone!

I bite!

peek-a-boo

llama llama time..

marshmallow toothpick structures

can you hear me now?

look out!

Maddie loves older girls!

Flashlight tag! I am ready!

snack time..

Jumping Maddie