Sunday, July 31, 2011

Angry Esophagus


Maddie’s esophagus got angry and strictured…I never thought I would hear those words…or even think that an esophagus had a temper…but like my little 2 year it does…we visited the pediatric GI doctor…I like him…does it matter if I like him…not really…but this is what he specialized in…angry esophagus…he gave us some different options…he gave us the reality that this is not going away…when Maddie was diagnosed with TEF/EA the surgeon said if this is the only thing wrong with your little girl…then you are lucky…not feeling so lucky at the moment…we have big decisions ahead of us…the GI doctor will coordinate with Maddie’s surgeon on the next step…options…dilate the esophagus with a balloon or insert a stent if the stricture is not to high in the esophagus…then repair her reflux…surgically repair this…WOW to say the least…we are getting a call this week to tell us what the two doctors think is the best route…do we wait until she strictures or chokes severely again…or do we prevent a trauma…insert “F” word…is all I can think and repeat in my head…this will all be done orthoscopically…this is a good thing when it is NOT your child…to the heart doctor…he will be calling us this week to tell us --yes we are having surgery within the next couple of weeks…or we have to grow her a little more…Maddie’s hole grew from a 5mm to a 8mm hole in 1 year…it is not closing…he is trying to prevent her from getting sick and to just get it over with…I agree lets just get it over with…save her the trouble of this later and her getting sick and in the hospital even more…this will also be done orthoscopically…this is good again when it is NOT your child…on a good note…Maddie does not need tubes for her ears at the moment…so we are waiting for cold and flu season…I am numb with all these decisions…I am pissed that my child is going to go through all of this…and I am scared to have her put under again…for the 4th time this year…I am not sure I have gotten over watching her be put under a couple of weeks ago…I still have haunting memories and pictures glimpses…of her going away…to watch Maddie be put under anesthesia was wrenching…I watched her have life to have having nothing…her eyes were bright and full of life to dark and hallow...like she died and went away…this is something I have not been able to comprehend or understand…I will do it again at least 2 more times this year…and that is a lot to take…as the doctors tell me to say strong…and smile for Maddie all I can think of is…that she knows that her mom is scared…just scared…so all of this is not a big deal…but it is when it is your child, your baby…I get the risks…I get the rewards…I get this is just the way it is…our “normal”… but at this time I have earned the right to be scared and pissed…it is time to try and let go again…but I am still working on how to…

Friday, July 22, 2011

shrek....really


I feel like I have been a downer lately...but really things are good…Maddie is getting back to her old feisty self…and so am I…it is really interesting how after a dilation of her esophagus…she changes her eating routine…last time she would not touch baby food…she would not even let it near her mouth…this time…it is ALL her at feeding time…she is self feeding…holy cow! She picks up her food and puts it in her mouth, chews and swallows…I am in complete amazement…I truly thought this would never happen…she is loving using a fork and a spoon…it takes her about a 1½ hours to eat…but really we do not have much going on…she does this little dance with her shoulder after every bite…as if to say I am so darn proud of myself! and she should be! I am crossing my fingers that this will last forever! Last night I decided to take Maddie to the mall…we had to pick up some things and she loves to walk and talk to people…so as we were walking…a 10 year old boy walks past us and starts laughing…his laughing took me back so I turned and looked at him…he said to his mom that little girl looks like a ogar and made the shape of Maddie’s glasses with his hands and walked stiff legged and bumbly like Maddie…my heart broke…but not for Maddie…for an ignorant 10 year old that mother did not teach him how to treat people…she simply looked at him laughing and said don’t say that…she could have done better…and so could have I…I wish I would had said something to him…but I did not have the words…and I still dont…what I do not get is how someone can look at Maddie…and see that…Maddie really is the cutest chicka ever…with a personality that shines…I am not sure at the ripe age of 2 years old she should have to endure this ignorance and hate…and as her proud mama I better find those words and know how to use them…

Thursday, July 21, 2011

its fine...


Everything will be fine…yep it will…because that statement is said and used so loosely…to make me as a parent feel better…I actually like that statement...I use it a lot in my head…whether it used when Max spills water into the laptop and fries it…or when I am talking with someone about Maddie and her development…Maddie’s development is so up in the air…and part of letting go is letting go to what I think should be happening and what is actually happening…Maddie is good for Maddie…and will everything be fine…sure it will because we will get use to it…we will adapt to make it fine…Maddie’s speech is on the verge or making me VERY nervous…she babbles, she inserts nuances in her speech and she string words together…she is starting to sign more and more…but with her being 2 years old comes her personality…like any two year old she wants things NOW and gets VERY frustrated when we do not understand…I would get frustrated to…will everything be fine…sure…Maddie will learn more and more signs…we will better learn to understand her words and communication...her communication is a big reason...I cannot see putting her in preschool right now…how will she be heard if no one can understand her…and how will I know if there is a problem if she cannot tell me…will she be fine either way…sure…but with my need for control and over thinking comes worry…next week our local Child Development Center is having a play night for kiddos…and a learning session for parents…but I have to leave Maddie with others…I love Maddie’s teachers and if they will stay with her the whole time…then I would consider going…but I know there are other kiddos…and that there is not just my girl in the room…I know I need to let go…but I am not sure I can…yes this would be great for Maddie…and probably great for us…and yes everything will be fine…but to put my Maddie in others hands is HUGE…I think I would rather stay and watch Maddie play with others then go and mingle with adults…what if I miss a HUGE milestone with her…what if a child is not nice to her…what if she cries…so much so fast…everything will be fine I will just keep repeating this in my head!

Wednesday, July 20, 2011

control is overrated...


Processing the complete lack of control I have is overwhelming…I REALLY like control…I like predictability I like to know what comes next…a schedule…choking gave me a sense of control that I could control what went in Maddie’s mouth…that I could control her environment…I could blame myself for not picking up good enough or watching her close enough…but with stricture…the closing of her esophagus…there is no control…I cannot tell when it is happening…I do not know if it will happen again sooner or later…so giving up the notion that I know what is going on…is tough…and it has made me realize that I need to let go…but I am not sure how…I am scared of this journey with Maddie…I am scared of what the future holds...I can handle a crisis…in the moment…I struggle with the unknowns and what ifs of days to come…I make decisions quickly without hesitation in a crisis…but when it comes to thinking of what I would do if this happens again…I think I would do the same thing…I would handle it the same way…doctors do not have answers…they are full of “in theory”,  “my experience tells me”, or “we will have to wait and see”…it is so easy for someone not living in this to “wait and see”…it so easy to point the finger when you look into our lives…the GI doctor in Casper will not assume responsibility for Maddie…I was told that no one in Casper would…so we will continue our trips to Denver -4 hrs away…I was told that it is only a few more bucks to go to the ER in Casper and then drive to Denver to be safe…a few bucks to you is alot to us…and it is not the money --it is the time…waiting in one hospital knowing we are going to be sent to Denver either by car or helicopter…I get no one wants to be sued over the treatment of Maddie…but I am at a loss…do we move to Cheyenne…because we cannot leave the state of Wyoming because of the huge benefits for Maddie…or do we stay here and resolve ourselves to this is our “normal” and we need to just deal…I have been also thinking a lot about the nurses we encountered…some good and some just oblivious to us and our Maddie…one asked what Maddie’s mental capabilities were…I asked her what she meant by this…she gave the “you know” answer…I said I did not know…I said she is a typical 2 year old and can give you a yes or no and mean it…I still am not sure what this statement means…would you treat my daughter different if she was different then who she is…she still needs treatment…she still needs pain medication if necessary…I told the nurse about the veins of Maddie…she blew one and had to poke her again…it drives me nuts how it becomes a pissing contest…if you do not know how to get a IV with a small child with flaccid veins…then ask someone who does…she apologized up and down and tried to make it better with stickers and tattoos…not impressed- just pissed…I am coming down from a anxious high…I am crying and trying  to understand…I guess this is what you call stressed and overwhelmed…I thought I could handle it…I thought I was handling it…so to manage I am hugging my kids…trying to sleep, eating good and exercising…in theory it sounds like the right things…but in reality I may just need a stiff drink…Maddie is day to day…yesterday she ate like a rockstar…today she choked on the same thing she ate the day before…just hoping for the best and preparing for the worst…only time will tell…but if I know Maddie she will be just fine and we will adjust…

Sunday, July 17, 2011

again :(

Thursday was the day that would not end...I knew that it was going to be a long day when both my kiddos were up when I had gotten home from walking...at 6 am...never a good sign...Maddie was off...clinging and just not herself...I began to reflect back on the things we had done; what we had played with...what she had eaten...to try to come up with her demeanor...she was arching back...stretching herself...screaming at me and rubbing her throat...I remembered the water balloons we were playing with the day before...and the hot pink one that she bit through...but I thought I had accounted for all of the pieces...I also recalled that she had choked at lunch on Wednesday and she did again that night at dinner...I was starting to put the puzzle pieces together...so Thursday morning I gave Maddie her normal everyday breakfast...Choboni and applesauce...she ate maybe 4 or 5 bites...very odd and she was slumped over in her chair...she was not interested in eating much...I chalked it up to her new tooth coming in...at lunch I made her potato and garlic soup...her favorite...she choked...she was screaming could not catch her breath...I had to perform the heimlich and when that was not working I was hanging her upside down from her feet trying to get whatever was in there out...the silly thing is she choked on mashed up smooth food...she then began tugging on her throat...we cried and called Chad-- told him I thought we needed to go to Denver...this may seem crazy that this is how we decide to go...we wait, we watch, we see if we can avoid what we know is coming...I napped Maddie woke her up and she would not sit up...she would not eat...so off we went...to Denver at 8 pm...4 hours later we were at the ER at PSL and I knew the day would never end...we made it to the peds unit by 1 am and we finally got to rest...8 am the best sight ever...Maddie's surgeon peeked in and she scheduled us for surgery...by 10 am Maddie was in surgery and by 12 pm she was waking up...they found nothing in her esophagus...they found something more crazy...more hard to wrap my head around...she was stricturing...only 5 months after her last dilation...she stricture...this was fast and very sudden...I always held onto the assumption that stricture was a slow process that Maddie would not be in pain...but that was not the case...Maddie was in discomfort...literally...she was eating things one day and the next day the esophagus was to narrow to fit the food through...so reflecting on the little signs of Maddie's stricture...her tongue protrude more...it was often hanging out...she was in discomfort...she was refluxing very severe...I could often smell it in her breath...she was clinging to me...she was just not herself...she was pulling and rubbing her throat...and her eating was horrible...my post about hating to feed her...was because my little girl was struggling...and I was just not thinking...that it could be her esophagus getting smaller and smaller so quick...so she was dilated again to the size of her thumb...and she is now recovering...it is not as smooth as the last time...she is still struggling to eat...she is in pain...and she is the bravest person I know...we are going to try some other things to help her esophagus...and I hope it will be here in Casper and not 4 hours away...I think the thing that I am the most in flux about is that I am not surprised...I am not over stressed...I have no emotion with the idea that this is our "normal" that Maddie needs tune ups...what does surprise me is the monopoly money we play with to fix my child and pay doctors, hospitals, surgeons, and pharmacists...how insurance will pay for a $300 a month prescription but not a $200 a month prescription...how when doctors speak I no longer hang on there words...I hear them...I research, I discuss and we find what works best for our Maddie...I always think that this is it...that we have found the light at the end of the eating tunnel...just to be brought back down to the reality of no control...just 2 steps forward and a few steps back...but Maddie is alive and we will see a GI doctor next week to help our team of doctors to care for our Maddie...

Tuesday, July 12, 2011

county fair...

typical...that is what Maddie is...kinda taken back...very surprised...I would not say typical and utter the words for a toddler born with Ds...just a typical 2 year old...that has no business at the county fair...it started out with a plan in my head...this year I will put her in the stroller so she can see the action...and not break my back...but as soon as we got in fair and she saw what Max was doing...it was over...there was tears and squirms and her trying to wiggle out of her stroller...so I let her out to walk and she tried to break through the fence to get into the rides...first one foot, leg and shoulder...but that darn belly just got stuck in the fence...she was not tall enough for any of the rides...so the toothless carnival guy suggests I put her in the boat floating on water with my 5 year old and have them play row the boat...yeah that is a GREAT idea...I can see the headlines 2 year old drowns in foot of dirty somehow blue water as her brother assists her off the boat...I politely say no thank you...and he persists and I repeat no over and over...then Chad chimes in to tell me to loosen up...easy for him to say...so Maddie finally got her wish -the rickety old flintstone roller coaster...Chad, Max and Maddie...and Maddie's face was priceless...she was so excited I bet she peed...and she smiled and yelled the whole time...waving at me and blowing kisses...it was amazing...I cried tears of happy...as the ride slowed down and stopped the fit began...Maddie screamed and yelled after each ride until we got to the next...and on the carousel she felt she was so BIG that she kept pushing Chad away from her because she really feels she can do things all on her own like ride a big plastic horse...she yelled at cows, horses, pigs, rabbits, and chickens...she hugged them and loved them and petted them...to say Maddie loved the fair would be a HUGE understatement...tonight I can here her going to sleep taking about her day and recalling her favorite parts of a typical night at the fair!

Monday, July 11, 2011

not so much

I intensely dislike (hate) feeding Maddie...mealtime is like an awful roller-coaster...with lots of ups and downs and unexpected turns and rolls...she is not constricting her airway at every meal so that is a positive...but her not just sitting and eating is awful...and the time it takes for her to self feed and for me to squeeze in assisted bites is just overwhelming...some minutes are better then others...Maddie thinks we need to play, read, scream, talk on the phone and throw EVERYTHING...and for good measure spit her food at me to round out the awesome experience...I have tried no toys, books, cell phones...but she screams and points until they make there way to her tray...I have tried her sitting on stools, at the table, on the table...her feeding herself, me feeding her...no high chair...just walking around the house and me following her with a bite of food...I get she is two and very social...but no one feeds her but me...she will not take food from others...I am not sure if she is manipulating me or if it truly is a need for her...if Maddie was not so cute and bursting with greatness...our mealtime experience may be a little less interesting...I know I should just be thankful she eats sometimes...and another tooth popped out yesterday but is gone today...it came up almost behind her one tooth in the front...so maybe it will come out in the "right" place when it decides to appear again...I am very nervous about her teeth...she is 26 months old and has 4 molars and one front bottom tooth...the doctors tell me not to worry...but I do...I just think meal time could be more productive and satisfying if she had teeth to assist in her chewing...sorry about the pout...but I just had to let it go...and prepare myself for dinner!

Friday, July 8, 2011

a nite out...

What a girl wants...

a girl gets!

Maddie's SuPErHeRO

cotton candy n bright lights...

Mmmm GOOD!!

Wednesday, July 6, 2011

a long way...

"they all look the same" funny how this statement makes me cringe...first "they" has a name and is human...second..."the same" is a fallacy...yesterday we took our BIG trip to Rapid City to reptile gardens and bear country...Rapid is 4 hours from our home so it is a LONG yearly trip...but sooo worth it...I knew I was going to enjoy the day when we were visiting the giant tortoises and a man with Down Syndrome came in and joined us at our tortoise...it was the first time I did not judge...the first time I did not panic...the first time I said hi and made eye contact with him and his family...they slightly smiled at us...but then they saw Maddie and huge smiles from all of them to us...the connection was made...the instant family was born...I have learned to be comfortable with these encounters...and what screamed out at me was that he looked just like his parents...he did not look like every other man with Down Syndrome...the stereotypes get old...not 10 minutes later we went inside to see the komodo dragon and there was a sweet family with a little guy with Down Syndrome...instantly I was drawn to them...and I noticed the back of his neck...I love the back of Maddie's neck...then I heard his laugh and noticed his mannerisms...and I knew...before I even saw his face...not because he "looks the same" but he has the unique perfection of my Maddie in his bounce...I went over to them and introduced myself...this is not me...I am not one to say hi or even smile at people...I just am not social anymore...but I had to...me and Maddie walked over and the first thing I saw was how much the little guy looked like his dad...gone were the facial features of Down Syndrome...and the cute glasses that matched Maddie's...but a little boy that fell in love with my Maddie...he was so taken with her...and her with him...they smiled at each other...had a brief conversation...hugged and held hands for a minute...he joined us for the bird show...and it was comfortable...it was nice...and I did not feel like we were being looked at or judged...just families enjoying a good ol American day...last year I would have left Rapid City crying and in shock of my encounters...I would have thought the people were smiling at us because they felt sorry for us...today I just do not care...when I was getting ready for the trip and packing...I went to the store and the pregnant cashier...was taken back by Maddie...and was visibly upset by the possibility of having a child like mine...but I have to say not every family can be as lucky as ours to have a child like us...because truly we are the lucky ones to have Maddie in our lives...people who choose not to give chromosomally enhanced a chance...are the ones that "look the same"...