Tuesday, May 28, 2013

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...

Monday, May 20, 2013

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...

Wednesday, May 15, 2013

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...


Monday, May 13, 2013

I am 4...



Happy Birthday Maddox Rose
May 13, 2009