Sunday, March 24, 2013

all sorts...

Maddie..all Maddie...

sorting and lining items up...

and more...

lining up and grouping

and more...

its just what I do...

Monday, March 18, 2013

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...

Monday, March 11, 2013

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!

Monday, March 4, 2013

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...