Summer

Summer is here...officially...and Maddie is in full blown summer camp...WHAT! I am excited for her...I know she is going to love it...I also know that she needs this intense balance of play, therapy and routine to make her blow up developmentally...on the flip side the reality hits that I cannot do it on my own...I have to ask for help...we are very fortunate to have some of the best therapist/teachers around working with our girl...and that is the only way that this makes this summer bearable...I miss her already and it has been 4 hours since she has left me...for a mother who thought Maddie would never leave...she sure is gone alot! Maddie social calendar is by far the busiest of the family...I have finally realized and/or accepted my role as Maddie mother...it is the role of caregiver and scheduler...Maddie mimics me and I hold her accountable for behaviors and such...but if I think of my role it is making sure that everyone in Maddie life has a purpose wether it is friend, teacher, mentor, therapist, doctor, nurse so on...each person plays a role in Maddie life and it is a significant role...they do not know each other and probably most of them will never meet...but each one has to be the best in order for Maddie to be her best...we don't just decide to do something it is generally with consultation from all contributing parties involved...for example potty training...everyone from me, mentors, teachers, and therapists all have to be on the same page...if we are not all saying the same prompts and using the same tools...potty training will take even longer...Maddie life revolves around what you cannot see...her insides...if the doctors and nurses do not do there jobs and I don't do mine then Maddie teachers, mentors, and therapists cannot do theirs...it is all a community of Maddie...the more I age and experience the more I get that I am in the middle and if I do not have my head on straight others cannot help my girl...so today we begin a new routine...a new chapter of sorts that will continue until Maddie has aged out...scary...not really...comforting that I am not alone in my love and passion for helping Maddie be more amazing...

no no judgement...

me "is he your only child?"
her "yes...you know I am old 41 and with all the genetic risks...we cant"
me "huh...my daughter was born with Down syndrome (I told her 2 seconds before this conversation) and although we did not think we could have a Maddie...we are so glad we did"
her "well you know"...

but here is the thing -I do know...but I want to say the hell if I do know...do I know the risks...yes I was brought up to speed very quickly with a 5 month ultra sound...I was the chick who did not think it could happen...would I choose the early tests to identify a "risk" "issue"...no I would again forgo that test...why because I wanted another child and I felt my family was not complete...Maddie completed our family...that is as plain as I can say it...but this is where it gets uncomfortable for others...I would take away her Down syndrome...because that would take away most of her health issues...and it would take away the worlds ignorance towards her...a ignorance that is far worse when people hold there opinion in there eyes...but would I do this all again...get pregnant...because my family was not complete...yes I would...and would I even go through the depression and self loathing just to have Maddie in my life and for me to be her Mom...yes I would...would I change the way I walked this journey...no I would not...I would still cry, worry, bitch, and be me...because that is who I am...there is no "right" way to do anything...I may worry about other things that now I see are more important...but I would do it again...because the love and satisfacmtion I have for being a mother is one that I never knew I could have...when advocating for Maddie I find it comes in so many venues...so many people have a preconception of what its like to be us...but I think it is unique to each family member...

new her "i overheard you say you have a child with Down syndrome"
me "yes"
new her "I have a cousin..she is 60 years old...she is amazing...I would love to meet your daughter"

and there is the other side of society...acceptance...excitement that Maddie is in the world...sharing...not judging...but what it gives me is -hope...that Maddie's life will have the purpose she desires...one that is her own...the other day on pintrest I pinned my first idea for Maddie's room...and it took me back to a memory of one I have of my Mom...how she loved decorating my room and she bought all this beautiful furniture and bedding...not asking me once what I wanted...and as a child I was resentful about it...but reflecting back it was her dream...it was her living through me...and now I adore it...I understand it....and because Maddie was born with Down syndrome does not mean I cannot live through her...I can get the little girl bedroom I always wanted! I understand now I can mother my daughter like I always dreamed ...again my journey...

update of sorts...

Tracheoesophageal fistula
Classification and external resources

A tracheoesophageal fistula (TEF, or TOF) is an abnormal connection (fistula) between the esophagus and the trachea. TEF is a common congenital abnormality, but when occurring late in life is usually the sequela of surgical procedures such as a laryngectomy.

TEF the bane of our existence...the "issue" that we were told was a non issue....that if this is the worst thing that was "wrong" with Maddie...it was an "easy" fix...yeah...no it is not...no it is not over and it is not "fixed" per say...in a round about way it has NOT been addressed...the TEF is the cause of what is "wrong" with Maddie...something that should have been diagnosed at birth...instead it was diagnosed 3 weeks ago...

Part of the Areodigestive clinic is seeing a pulmonary doctor...a doctor that we should have been seeing since Maddie birth...I am numb...surprised....confused...saddened and embarrassed that we just learned of this new diagnosis...Maddie was diagnosed with Trachea Malaysia....it is when the trachea is oval flat instead of round...it is described as floppy...she does not have the strength to cough up mucus...so in turn....when they scoped her lungs they found a lot of mucus...in the lungs, stomach, on and in the trachea...there is no quick fix...so Maddie has to do "treatments" 2x daily that consist of a vest, hypo-tonic mask, and inhalers...this helps move the mucus and encourages her to cough....mucus is not good...it can grow lots of bad stuff that can hurt the lungs....this "treatment" is helping prevent bronchitis...we are not sure how long she has had this issue with mucus or how much damage it has already done to her airways....so we do a ct scan in a couple of weeks to hopefully have more answers...yes she will hopefully grow out of this...no there is nothing they can do to "fix" this...just take measures to prevent blockages to the airways and branches of the lungs...

Maddie had her tonsils and adenoids removed 14 days ago...it was by far her worst surgery and recovery...but in the end it was for the best...I see a change in her sleeping...I see a change in herself being more comfortable...she did not eat for 6 days and very limited drink...she lost more then 6 pounds...and I thought we had made a huge mistake...but in the end she was amazing...her body healed amazing....she was on the verge of going back to the hospital...to the next day eating and drinking like she had starved herself for 6 days...I cannot blame her...I am just so thankful it is done...we stayed a total of 3 days in the hospital and I am glad we took the slow approach because I think it helped her heal faster in the long run...

Maddie still has esophagitis so they switched her medications and are watching her a tad different then before...still trying to be proactive to a closing esophagus...we switched GI doctors and I am not sure the change is permanent...it was just more convenient to see this one for time being...competition is good...right!

This is where I start questioning...why we even go to the doctor...crazy...maybe...selfish....probably... but there is part of me that wants Maddie to be a normal little girl without medications, oxygen and treatments...it becomes alot to handle as a mother to be constantly worrying about medications and treatments and time to do everything....I want Maddie to learn and grow...to play and do things in her time....but instead she is dictated by other things...I just want relative healthy...I just want a doctor to tell us that she is good and that she will live a long productive life...I am trying not to complain...I really know there is worse health issues..really I do...I am thankful she is alive...I am thankful that she is my daughter and that I get to fight for her...I just want there to be simple...

I am 4...

Happy Birthday Maddox Rose

May 13, 2009

potty is the pits...

Potty training...I am not sure Maddie is interested or even feels the sensation yet to go to the potty...she has peed in the potty one time...that is it...after 9 months of actively trying to potty train...she has no desire...she has peed on the floor and even pooped on the floor in this process...I suppose there is some small progress -she has begun to  run to the bathroom pulling up her shirt and standing over the potty like her brother...she likes to sit on the potty when I put her on it...she enjoys doing the sign for potty or pulling the potty pecs sign...but she is not interested in filling the toilet...

Here is Maddie sitting on the potty talking on her cell phone and enjoying the alone time! I should be frustrated...but I am not...I should be trying harder...but I am not...Maddie will be 4 in a few weeks...and over the summer I think I will try more...I just have this feeling that Maddie will do it when she is ready...like everything else in her life...we are on Maddie time!

any ideas, reasonable suggestions for this HUGE milestone is greatly appreciated!

belly breath...

i am not sure about the funk i am in...but it is a funk...i am completely baffled about our visit to the Down syndrome clinic...oh it was good -in the moment...i really am pleased with the service and so forth...what is killing me...the results...and with the results comes more...more tests...more studies...more doctors appointments....more surgeries...and more hospital stays...so the funk will continue...in February i said to chad i think we are good...i feel so great about Maddie's health...i said this is the first time in 4 years that we did not have a scheduled surgery in Denver...and then that all crumbled with Maddie's sleep study results and results from the Ds clinic...i called back for clarification of the sleep study...i called Maddie's pediatrician to take a second look...and i asked why we have waited so long to do this...how long has this been going on...and then there is the guilt of me not understanding or knowing or doing more and sooner...i am not an expert...and there is no handbook when it comes to raising or caring for my child...i have to make it up as i go...and in these times i feel like i have fucked up...i am not sure of the damaged that has been done to my child...there is several parts of this visit to Children's that is making me rethink how we have done medical care for Maddie...first the sleep study...with that the results are that she has severe obstructed sleep apnea she stops breathing an average of 11 times an hour every hour through the night...very common...i get it...but it is not just "routine" when it is your child...they will take her adenoids and tonsils out in a couple of weeks...repeat the sleep study and see if the problem has "fixed" itself...so she will continue on oxygen until...oh but that is not all...the fear of aspiration has come up and that her TEF has returned...so in a couple of weeks they will check that out...that is a big deal...then the never ending esophagus...low muscle tone...chewing...eating...yuck...can i just say i am so over it...to our knowledge Maddie esophagus is open...but we do not know if she is also aspirating when she eats...if she is strong enough to chew...(Maddie does not shew when she eats unprompted, when prompted it is not productive) and if things are moving through correctly...so on Monday we will have the swallow study and feeding evaluation...not a big deal...until it is your child doing it...i do not want results...i do not want findings...i do not want more appointments...surgeries...therapy...explaining why we do this or that...am i feeling sorry for myself...maybe...but i am bummed for Maddie...again she will return to a hospital baby...she will become complacent...she will become bored...the gains she has made from being "healthy" the last couple of months are incredible...i know this is life with Maddie...i get it...and i will do it...anything...but i have to let it out...and letting it out does not include rehashing Maddie's medical history to every doctor we are going to see...we are seeing a lot of doctors...we are going to what is called the areodigestive clinic that includes but not limited to GI, ENT, pulmonary, and a array of therapists...it is a 4 hour visit...and then surgery on conclusions the next day...it is fast but efficient...I am also frustrated that only recently we were able to afford to do all this...we have had to put what we can afford and what is absolutely necessary first...i cannot believe that i thought that a sleep study was a when we get to it...when we can afford it...insurance does not pay for this unless...and the unless comes from the help of other doctors...i have advocated about Maddie sleeping so much for over a 2 years to anyone who listen...i have advocated about her awake snoring for at least a good 1 year...and i have understood from the beginning that Maddie would have her tonsils and adenoids removed...the issue -my baby stops breathing at night...and what if...what if she did not wake up...that is my fear...so again i guess this is a members only thing...only people who has the knowledge that there child stoping breathing 11 times an hour can understand that it is fucking scary...i kiss her every night in the hopes that when day breaks i will be able to repeat it the next night...so again is this "routine"...probably until it is your child then it is reality and dramatics sets in...the TEF is also an unknown...this is what Maddie was born with a interaction between her esophagus and trachea...that was "fixed" but we knew it could come back...and there are signs that it has...this uncharted territory for us...because it was not what we expected...but it is something we have to address...Maddie and eating is just a ongoing issue...not one we really think about anymore...she eats certain limited things and we provide her what she wants...that is it...i am not going to push an issue when medical care is 4 hours away if a bad eating choice happens...that is our reality...and there it is...my funk...i was so hoping that this would be the year of no hospital stays...but it is a record to make until April...small victories...so i will continue to belly breathe and go through the motions of being strong like my Maddie...

Easter! Happy Hoppy!

going Egg Hunting

so many eggs...

SNOW! really!

I got this!

MINE!

Yeah I am a COOL Rider!

Happy Easter! 2013

all sorts...

Maddie..all Maddie...

sorting and lining items up...

and more...

lining up and grouping

and more...

its just what I do...

Hospital Baby...

Getting ready for Maddie's sleep study the center would ask will she be ok? I said she is a hospital baby she will be fine...when we go to give blood every 3 months they ask will she be ok? We say yes she is a hospital baby...this term was used to describe Maddie during her 3 week rotation of dilitations on her esophagus...the nurses would be happy to see her becuase they new she plays the part of a hospital baby...Maddie will assist in the placement of the anthesia mask...she will hold her arm out for the blood pressure...she will look the other way when her heart is being checked...at the sleep study it was 45 minutes of placing stickers and wires all over her body....then the cannula...not once did she say no...not once did she turn away...not once did she act like a normal 3 year old Maddie....instead she acted like a hospital baby...one that knows her role...the expectation of everyone...and this is a behavior I have grown to dislike intensely....yes it is nice to not fight with her...yes it is nice not to get nervous about how she will do...I get sad because she is not typical in this respect...that she knows to much about hospitals and doctors....that she knows how to be a patient at such a young age...in the waiting room she was typical stealing others toys trying to talk with everyone...but as soon as we put her in a hospital bed with Adele on the iPad she becomes a hospital baby...I wonder if she will change or if she will always know her role...I guess only time will tell...last week we had to put her on oxygen at sleep time...and as I was placing it on her in her own bed she whimpered...she gave me a look of not here to...this was her safe place...away from a hospital...no wires, no tubes....just her and her dollies...after a week again she has complied with the placement of the cannula...she leaves it alone for the most part...but again I want her to fight...I want her to know it is ok to say no...maybe I have the bigger issue with the oxygen...it is not ok to see her with tubes every night...I don't like it...I want to beleive everything is ok...but not with Maddie...when she is good it is only till something else happens....and then we have to plan on another surgery...is it a big deal...nope because Maddie is a hospital baby...

Now we wait...

We drank the Children's Hospital kool-aid and we are not going back...like ever...Maddie was born at a traditional hospital in Denver stayed in the NICU and saw specialists and surgeons that were affiliated with that traditional hospital...I always felt like I was fighting and searching and having to be one step ahead of them...because Maddie was clearly not getting what she needed...one day I was reading a blog and heard of the Down syndrome clinic at Children's Hospital in Denver..then I began seeing it more and more on facebook...and I knew I had to get Maddie to people that knew...knew more...personal friends have been going to Children's in Denver for years but I did not understand the difference until I walked in to the Hospital...until I went to the bathroom and they had child size toilets...that the counters were all low so the Children are seen and heard...everyone...I mean everyone greeted Maddie first...and not just my insurance card...we were at Children's for 3 days and it was the most stress free visit to a clinic or hospital we have had...

Maddie so excited to be in Denver...NOT

our appointments began with Audiology...I was not sure if Maddie hears correctly...Maddie has selected hearing to the point that you just do not know if she is being 3 or if there is a issue...this appointment took approximately 2 hours and she was great...best of all they were great...they recognized she was getting bored and changed up the games to test...they never got frustrated and it was 5 pm in the afternoon...the results are in and she passed with flying colors...and that Maddie is in fact typical that she has VERY selected hearing and chooses who and what she wants to acknowledge! this is good...very good!

the next morning we were in the Down syndrome clinic...this was like a well oiled machine...we met with the Speech-Language Pathologist first and she was informative...general...but throughouh...I explained what we were interested in and she made recommendations on that...what threw me for a WHAT! was when she wanted to do a upright barium swallow and feeding evaluation...Maddie has not had one of these done since she was about 1 years old...she explained the difference between the esophagram that Maddie has done monthly and the swallow study...it was during this appointment I realized the difference in care...they want to understand Maddie's issues with food and swallowing...and that they are two separate things...I would not describe Maddie as a picky eater...but I would say she has difficulty getting food to her mouth, chewing, getting food down to her esophagus into her stomach...all VERY different issues...each component is something we just need to look at to make sure we are not making her esophagus worse or that we are not putting her at risk every time she eats...not sure why we have not been doing this along...but the is part of the kool-aid...

initial diagnosis: Expressive speech disorder and Feeding difficulties & mismanagement...

then the PT appointment...this was FUN...I mean FUN! Maddie drove and rode a hot wheel bike, walked up stairs, and raced me and the PT down the hall...and Maddie played...with that...we talked and discussed Maddie...and lets just say Maddie is doing great...Maddie jumped and did all required movements...she said to give our therapists a high-five...and I agree...Maddie does need orthodox so they fitted and ordered them within that visit...I did not have to go to another office it was smooth...

then the Doctor came to see her...this was simply put -crazy informative...crazy comfortable...crazy hopeful...what I am saying is that this doctor gave time, thoughts and did not blow smoke up my ass...it was nice...he actually said that as he was reading about Maddie and thinking about her care that he did not know what to expect when he met her...that she was surprisingly more healthy then he thought she would be with all her surgeries...that he could not wait to put a team together and find solutions for her...this was like the heavens parted and sun was coming through the room...there was a doctor that wanted to help Maddie and her esophagus...all we have wanted was NOT to be driving in the middle of the night on snowy roads to Denver to be put in the hospital and maybe get care in a sufficient manner...with the feeding and swallow study this should help with what Maddie can eat and how we should feed her...currently her doctor thinks we should just take the risk and try new foods as Maddie wants them...GREAT in theory until its not...

initial recommendations: see the aerodigestive clinic, blood work- Celiac (IgA & TTG), CBC, Ferritin, Retic (iron tests)...

next was the sleep study...I have putting this off for a LONG time...I am not sure why...i was scared at the results...but I know I needed to get Maddie in there...Maddie sleeps alot...she snores awake and asleep...she mouth breathes...and she sits up and rolls...so I knew there could be some possible issues...this was intense to see all the wires coming from her...but she handled it like a rockstar and was a perfect patient...Maddie was put on oxygen when she dropped to 79...and we know she rolls...we are nervous about the results...but I know it was necessary...

now we wait for the results...and we take another turn in or journey of care for Maddie...I am excited and feel that we are not alone...that we are not the only ones seeing the issues...Maddie deserves the best...and I really feel finally we are going to get the best...yeah for stepping out of our comfort zone!

few words...

I know now why no one wants to be the people first language police...because it is hard to have your heart held captive by other people's self loathing and ignorance... as i move through this society i hear people talking and laughing and at times trying to be funny...at the expense of my child's diagnosis...I get they dont "mean" it that way...but does that make it ok...I cannot explain the feelings that come over me when I hear the r word...at times i am numb at it...but other times i just cannot contain myself...the more Maddie shows me how "normal", "typical" she is...the more i get offended that others put such judgment in a word...

as i am standing in line at Bountiful Basket enjoying the sunshine...I hear a conversation behind me...filled with ignorance and hate...and then I began taking deep breaths...each one knowing that i have to belly breath to calm down...i know what is coming...i know they are going to say it...and i know i am in no mood to be nice when they do...and then as i stand there i have an internal struggle...do i confront...or do i let it go...do i make them feel like i feel at this moment...or do i not...this is the question for all of us struggling to make a people first place world for our children...as i stand there i brace myself...it is building and sure enough it comes...and there it is "those people are a bunch of retards"...with no hesitation i fly myself around and take off my sunglasses and in one i am going to kill you look i stare that women down...and without words i told her to fuck off...and she did not say one more word the rest of the time we were in line...i hated her in that moment...and at that moment i realized i am the people first language police...i just need to get me the badge...the badge of honor...maybe my badge is Maddie...without words i showed disappointment and contempt...without spewing more hate at her I made her feel like i felt...

on pinterest i see those "funny" ecards and somehow they show up on facebook...when i see them using hate language i always report them...it is my way of protecting myself...making myself feel better...like i am protecting Maddie...i do know it does not make much of a difference...but for that moment i feel better...so to my disgust one showed up on my news feed...and instead of ignoring it or hiding it...i commented that i did not think it was funny...of course the response was...i did not "mean" to hurt or offend anyone...and that took me back...and thought REALLY how could you not intend on hurting anyone...when you posted a supposed funny and it had hate language on it...i am not sure when society stopped being nice so you can be funny...so i evaluated again how i use social media...i place my blinders back on and cup my hands over my ears in attempt to protect my heart...

-March 6, 2013 is the National pledge day to stop the hate language r word...or you can consider doing it everyday...