Wednesday, February 29, 2012

Esophagogastroduodenoscopy...

Maddie's surgery went smooth...I am not sure I have seen a longer word; Esophagogastroduodenoscopy is the procedure that was done...in short her esophagus was dilated and we will see how it holds!
pre op...n cute
been here...done this...
can I go back to sleep...
this is what I think about the whole thing!

Monday, February 27, 2012

protect...

“it is no big deal”…”it is quick”…”it is outpatient; so really it is not that serious of a surgery”…and I agree with all those phrases when it is NOT my child…these phrases piss me off…they are inconsiderate and well just insensitive…I am the type of mama that gets uptight about anything from routine shots and wellness checks to surgery…I just get wound up and think of everything that could happen…WHY…because it did happen…so to think anything is routine is ridiculous…and not a fun way to live but it is reality…I am thankful when we see the doctor and there is no serious conversation…no further testing…no follow ups…I like when they say see you in a year…heck I will take see you in 6 months…I think the older Maddie gets the more I love her…the more protective I am of her…I have completely fallen head of heels in love with my child…and I have put my guard down with her…in the beginning when I just had her I did not think she would live…I was not in love with her…I was guarded and I put up my shield to protect myself from the pain I knew was happening and could happen…but now there is no turning back…I dread the part that I have to give her to the doctors…I hate the part where they put her under and the life in her eyes die…I hate the feeling of walking out the door with out her…no longer protecting her…no longer holding her…I always look forward to being there when she comes to…and she sees me and lunges for me and I hold her so tight…her smell the sound of her suckling her thumb…and the relief that rushes through my whole body…and it is time to start eating so we can go home…I know this is something I have to get used to…this is our new “normal”…I know that this will be repeated every couple months for awhile…so it is time for me to just buck up!

Thursday, February 23, 2012

again esophagus!

Maddie has a little wiggle in her hurried walk…her butt swings from side to side so effortlessly…and so darn fun I can not get enough of it…she bounces as she runs and her giggle and hard loud laugh fill our home…it is hard not to smile when you around her…she loves her friends and she loves her brother even more…Maddie does not accept the word “no” and redirection is not taken lightly with her…Maddie is just that Maddie…with her crooked smile and glasses…she is my girl…Maddie’s esophagus is closing again…more then 50% already and surgery is for Wednesday the 29th of February one year to the day of when this whole closing of her esophagus began. I do not know much more then I did the first time it happened but I do know that it begins to close every 3 months or so and with that comes anesthesia, shots, doctors, hospitals, and objects being shoved down her esophagus in hopes that someday it will stay open. Maddie is a pro at this whole process…she can tell me it is closing by pointing to her throat, not excepting any food that cannot easily go down and by arching to her right side…Maddie is doing great only eating yogurt, cheese, soft noodles, soggy chocolate cheerios, ice cream and puffy cheetos…and I am glad we are starting to manage this instead being held hostage to her choking…

Tuesday, February 21, 2012

unrecognizable

as I go along with my life...it is somewhat in a daze...since I have gotten older and become a mother...I look at myself and wonder who am I...constantly reevaluating...who do I want to model for my children...I am a outspoken person that at times turns people off...so when I had Max I tried not to get testy with people...I want him to treat people nice...sometimes in the car I will cuss and talk to myself and he will ask why I am getting upset...I try to explain to him and I sound so dumb when I try to rationalize it with him...then I had Maddie...and I became completely unrecognizable to myself...everything I was comfortable with was gone...everything that I knew to be truth was shattered...and as the years have passed...the normalcy I once looked for I no longer want...I do not want to go back to the person I was...so with that...the friendships and relationships that died through my tough times with being Maddie's mom I have now accepted and I have let go...I am not the bubbly person that thinks positive...I am the mom that gets life is not fair...and that we will do our best...this is not a personality people like or flock to...this is something I have had to get used to...so do I be the person others want...or do I be the person I am...and it has not been easy...recently I turned on my charm at a party...and found I still have the charisma that people used to like in me...but it was fake...how is it some just get what is given to them and is easy going about it...and then there are people like me that struggle with it...is it the constant medical issues with Maddie that reminds me that I cannot put my guard down because that is when something happens...or is that I cannot give it to someone else to burden...I have accepted my new role in this life...but the change is still hard and unknown...

Wednesday, February 8, 2012

TO MUCH TALK

I cannot stand when someone says to me..."maybe you should talk with someone, like a counselor"...REALLY! picture it I am at the doctors office and there is an intern with my doctor...we are discussing ways to lower my blood pressure...choices medication, antianxeity medication, and life changes example; diet, exercise, red wine, stress level...so this is something I have been battling since Maddie was born...so 2 almost 3 years later I know I have to start taking a more proactive approach to my health...I changed my diet to the Meterarian Diet, a glass of red wine 3 times or so a week...I exercise daily...and then there is my stress level...his thought was breathing techniques...ok I can handle that I do need to work on it...but the interns comment talk with someone! I simply replied "why would I talk with someone who has no idea what I am going through...has never had a child with Ds, TEF, and societies ignorance" WHY! if I can find someone that has lived in my shoes in relation to a child with needs...then I would go...but if you got answers from a book and you hear it went well...no thanks! I get that I am a bit abrasive but I do not think doctors know much about everything...unless it is there area of concentration...it was clear she knew what she knew from a book...so nothing she says is worth my time...I know very "Kim" of me...but recommending me for counseling is just a phrase that makes me red...she then proceeded to say that "maybe things will get better...that maybe my stress level with my child may decrease"...I said that "her esophogas closes every couple of months and that is not going away....miracles are not happening here...and then I explained that Down syndrome is not going away it is something we will live with forever..and with that comes stress that I am not accustom to"...read my file or ask a question before you sound lazy for not reading up about me....its all there! and yes I am at peace with Down syndrome...but as Maddie changes so do my stressors...it is what it is...so I decided to take blood pressure medication, continue my healthy lifestyle change...and breath deep!

Thursday, February 2, 2012

more...

as I dropped to my knees and cried...why? because my baby said "more"...Maddie said "more" and repeated it for Chad...this is the first word in a long time...and the very first word that she has repeated with practice...it had purpose and it was clear as day...Maddie with a huge smile hugged me...and then did not understand why I did not get her more cereal! earlier today she signed her first sign unprompted...she signed cereal...Maddie has many signs and does the PECS cards but most words and requests are prompted and with minimal choice...this is a huge step I think in her language...something that is frustrating to no end...Maddie has so much to say and none of the words to tell her story...she babbles all day and has many meaningful conversations...people listen to her and then laugh and smile...with no idea what she is saying...including me...it is heartbreaking to watch with no hope of a miracle...I know that Maddie and talking clearly will take a very long time...but today I am going to smile and cry tears of HapPy and relief...