angry esophagus again ;(

the week that will not end...on Tuesday we went bowling...we were enjoying some nachos...Maddie grabbed a hand full...I tried to sweep her mouth and lets just say her new teeth HURT! one thing led to another and at 4 am we were on the cold Wyoming road to Denver to get what ever was in out...we ran into a GI doctor that said that nothing was stuck -to me demanding a swallow study...sure enough there it was plain as day...olives, onions and hamburger...by 2:30 pm Wednesday Maddie was in surgery to remove the stuck food...during the time in the ER we were patronised by doctors and nurses on her demeanor...how well behaved she was how just calm she was...they kept telling me she just seems tired...by them interpreting her behavior like this...came with hours in the ER...triage is a bitch...Maddie can breath when she has a partially blocked airway...if she sleeps she will stop breathing for a bit and wake up with a gasp...she cannot eat or drink and her breathing sounded like a frog in her throat...so 15+ hours she went without food or water...but she was a good girl so she could wait (sigh)...by not being heard I became a very mean Mommy...and then the guilt on how I treat people seeps in...but I got what I needed for Maddie but I also burned some bridges in the process...it is a hard position and one I am not comfortable in...by Wednesday night we were released from the hospital...Thursday morning we were at the heart doctor...and Maddie is what they would call "normal"...that is the first time I have heard those words in regards to Maddie...her heart has made a full repair and we do not have to go back until next year!!! all awhile I was fighting with the GI doctor...calling other pediatric GI doctors...Maddie has a stricture and it has to be dilated now...I do not want selfishly to miss anymore work...I do not want to drag Max out of school...I do not want to stay in hotels anymore...I want this done now...and on this years deductible...so while we wondering around the Natural History Museum waiting for them to call me and confirm another appointment...I called the GI doctor again and they had a cancellation...we rushed to that appointment...Chad had words with the doctor on the situation...and now we have surgery today...Maddie will have her 3 dilation on her esphogus in 6 months...this time it will be done with a balloon...she is sitting beside me playing elmo and has no idea that in a few hours she will be under anesethia again and being poked prodded and her esophagus violated...thank goodness it is Friday...

Sugar Sugar...

Ready Maddie?

Mom's not looking!

I do Mom!

No teasing Max!

Smiles

cannot get enough!

so Silly!

say bye bye...

to this week! wow we have been the sickooo family for the last month! it began with Maddie puking for days, then Max...then me and Chad! thank goodness Max could help with Maddie while his parents had there heads in the toilet...then this week...Maddie started acting off...her smashed toe turned wired shades of purple...and began to smell...on the same day she started puking again...low grade fever...and 3 new teeth! 2 molars and another weird shaped tooth on the bottom...so I figured it was an infected toe and new teeth...went to the doctor and the poor girl has strep throat...then I got it....and Max and Chad...what the heck! I think we need a vacation! and Maddie's toe it is infected...and she will lose the nail...antibiotics are our friend...very thankful for science and good doctors...

overrated...

Sometimes the frustration just boils up…I am VERY comfortable with kids/toddlers…I am what you would call an expert of sorts…I have an early childhood degree…I have worked in the Boys & Girls Clubs for 10 years…and I have owned and operated my own home daycare for 5 years…and I am at a loss with Maddie…completely clueless when it comes to her…she just does not listen…and if she is listening then she is not following through on the task I am asking…yes her behaviors are very typical of most 1 and 2 year olds…but it does not mean I have to like it…or just chalk it up to Maddie being Maddie…when she cries I still get upset…when she gets hurt I still cry…and she cannot communicate or better yet will not communicate to me what is wanted then I get as equally frustrated…I think I have told Maddie at least 100 times not to climb on the kitchen table to sit, dance, eat, draw, and or paint…I think I have taken a stool away from her 50 times because there is a reason I have counters and I put things that Maddie should not have on them i.e. choking hazards…when she touches anything and then has to taste it I go crazy! tasting dirt, toilets, mud, rocks, glue, my hair, her hair, other kids hair, just wired…but the kicker of all kickers is when Maddie screams to scream because she does not want to walk from Max’s room to where I am…she is not hurt, she is not incapable…she is lazy…when I walk in to see what is up it is a hi with a smile and hands up…Maddie is my shadow…I do love my shadow just not the shadow that I am consistently having to go around or over or pick up…I know or I think someday I will miss these days…I know I should be thankful I am not in the days wondering if Maddie will do this or that or the other thing! because she is doing this, that and the other thing -times 3…and some things I never ever thought imaginable…

a little petty...off my chest...

the women that said to me "Maddie seems to understand what is being said" is now her case worker...cannot say I am thrilled about this...so naturally I threw a fit to Chad and started asking questions...questions about her...I asked how much experience has she had...and what experience has she had with our community in regards to Down syndrome..and what is her background with Down syndrome...honestly I could care less if someone has knowledge of any other "ability"...I just want them to know Down syndrome...I do not think a person has to be as close to it as me...but I do like experience and a little thought before they speak...I am not sure she is ready to work with families if she has very limited knowledge in what we are facing...this person is the person that will help us and guide us through Maddie's first introduction to "real" school...I am not sure she has what it takes to get the job done the way I want it done...I am very nervous about this...this is the first time I have said hold up not so fast...conflict is not something I like...but Maddie deserves the best and frankly so do we as her family...I just do not want to deal with someone in this capacity that I have to teach what to say, how to it and how I will be offended if the wrong thing is said....the other day while I was listening to someone else's conversation...in my ob/gyn office a women came out and said to the receptionist...I always get nervous about you know having a baby with my age and such...I thought to myself should I say no what stuff...I am not sure I understand your worry...at all...I do not understand why people worry about Ds and babies...there are much bigger issues to worry about then Ds...there is EA, heart, lungs, etc...but age and Ds that is just nonsense and a waste of a stressor...I really am not sympathetic to someone that is having a baby...you choose to get pregnant take the baby and love it...be thankful it is alive...I know this is cold but really as a society and adults we should know what comes with having sex and having a baby...just because you want a baby with blond hair and blue eyes you may not get it...deal with it...the Duggers...I am so not a fan of them...I think and you can disagree...they are way out of line on what they think is appropriate for our population and for raising children...they do not understand the word simplify...I would like to know how a mother and father can have enough time for all of them...when I struggle with my two...so I got that off my chest...but the HUGE reason I am not a fan...I think it is VERY suspicious that they have not been "blessed" enough to have a child like mine...she is 45 years old 19 kids and counting and no chromosomal things -none...that just sits funny...I am not mocking a miscarriage that is rough and cannot imagine the pain...but I wonder why more people are not having a child like my Maddie...considering statistically we should...and really everyone should have a Maddie...they would laugh more, love more, grow more, understand the true meaning of why life is worth living...with a Maddie they would see what is possible instead of always wanting more...just saying having a "healthy" baby can be taken many different ways...

so 2!

This is a snap shot of how Maddie spends her day...and why Mommie is sooo tired!

Maddie the Dino Digger

I see bones...brother

look what I found

one more bite

yum snow!

it is like this

stools are my friend

this looks tastie

I see the fork...but...

I went potty...really

see! with my cute dress

ouch!

bad deal! sad toe...

time heals all...

It seems that I cannot live without Down syndrome...I am not sure I want to live without it either...which is stunning and quite confusing...in the beginning of this what feels like a forever journey...I loathed Down syndrome...I did not like anything about it...somehow beauty has become synonymous with Down syndrome and my perception of it...a sense of "normal" comes with Down syndrome...it startled me today when I was thinking if I would have Maddie all over again...if I would choose to do things the same exact way...and the answer surprised me...I would...I would take Maddie just the way she is again...I may take away the health issues...but I would not take away what makes Maddie -Maddie...my life is now consumed with Maddie and Maddie's routine...I cannot fathom my life with out the extra chromosome and what comes with that little bit of extra goodness...I was asked the other day if I would have another child if I knew for sure it would be born with Down syndrome...I could not answer that question out loud...because that answer would be no...not because I am scared of it...not because I am selfish and would not want another child born with all the extra's that comes with Down syndrome...but I think no because I would rather adopt a child born with Down syndrome then create another...when there are so many children looking for forever families...in the beginning I thought I was being punished and asked why me...why did I have to have a human born with Down syndrome...never once thinking about Maddie and her feelings it was all about me...now I see life through her eyes and for some reason it does not seem so hard...it seems effortless to love, to learn, to grow...I guess time does heal...

shake of the head...

Going bonkers…Maddie is driving me silly! everything that is put away is now not! clothes out of drawers…then in to the laundry basket or on the floor! silverware out of the drawer…thrown across room...toys in boxes...out on the floor…markers in containers…put in garbage...she can open the cabinets and out comes everything (yes the are child proof –just not Maddie proof…with a head nod and a “there”…when I try to redirect Maddie simply rolls her eyes and continues…not very nice from a 2 year old! in 5 minutes she was in the bathroom playing in the toilet…going outside and driving a hot wheel on the deck almost falling off…and at the sink to wash her hands…busy is an understatement with her…today I brought snow in the house for her to play and keep busy…she decided it was fun to stomp in it and all around, throw it and best of all eat it--naturally…I was trying to get meaningful play with her…demonstrating cars, barbies, bowls, etc…she just likes to takeover and destroy…to think I was worried she would not be typical or normal! I however am very tired…so the blog and house cleaning have taken to the back-burner! If my eyes are not on Maddie there is trouble being found!