Esophogas

When Maddie was diagnosed with Down syndrome in vitro...it came with more...so we went and visited with a surgeon...and I know I have said this before...she said that if this is all that is wrong with her...it is a great diagnosis...so I held that close and I would refer to that comment throughout my pregnancy and after Maddie was born...so Maddie had the "fix" surgery...she had her esophagus attached to her stomach and a blockage removed from her esophagus to her trachea...done "fixed"...and then Maddie wanted to eat BIG people food...so I would give her pured foods and she would choke...I would give her a macaroni noodle that was mushed or cut up in 3...and she would choke...I would give her a mushy half of a cheerio...and she would choke...so chobonni was a staple in Maddie's diet...it has been two years from then...10 surgeries...and finally her esophagus is staying open...this is the first time in 3 1/2 years that we do not have a procedure scheduled...we have no planned trips to Denver...so in that time I have referred back to what the young surgeon said to me...this is a great diagnosis...an "easy" "fix"...what I have come away with...it is an easy procedure for specialists...it is easy for them to diagnosis and "fix"...it is not for the parent...it is not for the patient...I am excited that things are looking up for us...that Maddie is seeming to do better and just in time for BIG girl school...so as I reflect back...I would give suggestions for TEF/EA survivors and there parents some of my helpful hints... be informed of where the stricture is...know who your surgeon is...and what tests and procedures will be performed...and who will perform them...have a plan on who to call and what to do if your child chokes...know what is expected of your child and you...ask questions...write the questions down...write the answers down...ask advice but do NOT take as gospel...know that this is a doctor that has not tried to put it into practice...in theory feeding your child should be easy...it should be natural...with a child like Maddie it is NOT easy and it is not natural...does it get better...there are days that Maddie eats good...and then there are days she does not...some will say...that is with any 3 year old...sure...but please do not say this to a parent with a challenged eater...I would say go with what you think is best...it is a hard leap to take...but I have had doctors tell me to try this...and then look horrified that I tried "it"...its ok for your child to eat breakfast for every meal...if it works do it...if we supplemented to much with Maddie she was not hungry and would not eat...it took Maddie 3 years to learn to chew...and I still have to prompt her...last week we were told that there are no restrictions on Maddie's eating...to go with what works...I took this advice and ran with it...but I have always given Maddie what she wants to eat just motified...why? because I am her mother...and I have never forgotten that...I have learned doctors are NOT always right...and they do not always know what they are talking about...also be careful of "support" groups...fear mongering may NOT be the intention...but when a parent is scared and unknowing they tend to listen more and react with out common sense...I did...and it left me feeling helpless with no control of my daughters health care...however now I feel like the expert...I have done the research...I have read, asked questions, and experienced enough with a strictured esophagus I know what works for Maddie...TEF/EA sucks....it is not the best diagnosis but it is survivable and completely tolerable....

my scientist...

Max went to Teton Science Camp...and Maddie went to KW science camp! She loved looking in the microscope! Just like her daddy!

Bruno Mars - Just the Way You Are (Cover by MattyBRaps ft. Tyler Ward)

What is up!

Summer has been more then BUSY for us...planes, trains, long long car rides...preschool...I have mixed feeling about how Maddie's first school experience went...the transition of us leaving her was more difficult then I imagined...the letting go and trusting others was forced...and Maddie gained a bit through this experience she learned to say goodbye with a waive...she learned we would comeback to get her...and she got to know her teacher...a routine was established...I am feeling better about the new school year...but there is a but...I was able to observe Maddie while she was at school...I was watching her outside lining up to come in from recess...Maddie was not paying attention watching the other kiddos...the boy next to her was much bigger then her and she just could not help touching him then she pushed him with one hand...he did not moved so she decided to push him with two hands till he fell to the ground! Then she was satisfied and said "there" turned around and stood in line...although I was proud of her persistence and not being afraid of a larger child...I was surprised by her naughtiness and the lack of displine by her teachers...there were 3 teachers there and instead of telling her not to push, touch and say sorry...they ignored it...not a big deal...yeah it kind of is...Maddie is a pint sized bully...she will tackle others and pull hair...so I have to be on her consistanly to hopefully change these behaviors...when I brought it up to her teachers...they went back to her size and cuteness...I just asked them to be more consistent with her discipline and self control issues...while I was obseving another time her one on ones was not paying attention to her...so Maddie was staring at her and purposely putting things in her mouth...then when the teacher noticed she would take the items from Maddie tell her yucky and resume the conversation with the other teacher...this happened 3 more times...I was just expecting more...again I mentioned something and was explained it was summer so it was less structured...not what I was wanting to hear...then I begin to question...does Maddie need more...I have to rely on what people tell me about Maddie her behavior and what they think she is getting out of a particular expeicne...the teacher tried to give me highlights of what Maddie did, experienced, and learned...but I still think she needs more...of course Maddie will take the bus to school in the fall...of course she will attend school 4 days a week...and of course she will receive extra therapies...but will it be enough...how will I know if Maddie is getting enough attention...enough of the "more"...the highlight of school...Maddie found a friend...he is a few months older then her...they hold hands...they found each other and the friendship was not forced...they slide together and sit together...she does not push him...and did I mention he also carries a little extra!

a Presidental trip to DC...

Chasing Fireflies...a first for Max n Maddie

Room Service -- yummy!

Chad being presented with the Presidential Education Award in Math and Science...So PROUD of him!

Max holding a Triceratops horn!

digging for fossils...its hard work

getting her groove on!

sweet music at the Smithsonian Folk Days Festival

follow up...American Girl

I did write American Girl...here is what I wrote and here is there response not sure I am satisfied with there response! I will ponder what my next move is! 

Original Message Follows:
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Hello! my name is Kim Sharpe and I have a daughter that is 3 years old.
I was under the impression that every little girl could find a doll just
for her. Maddie my daughter was born with light brown hair and ALMOND
blue eyes. the eyes are significant. she was born with Down syndrome and
there is not a doll to represent her and many of her friends. when I
visited a store I was told there was a bald doll. fortunately my Maddie
has not endured leukemia but for kiddos with Down syndrome it is a
probable diagnosis. many of her friends have survived this diagnosis and
I am thankful you have thought of them. however, I would like my little
girl to have a doll that represents her beauty and her uniqueness. she
fully understands the world around her and would love to play with a
doll that shows her how beautiful she is. thank you for your time. I
have posted a post on my blog about this subject and you are welcome to
check out my Maddie to see what a GReAt girl she is. http://chromosomallyenhanced21.blogspot.com/



From: American Girl
To: lionsdenchildcare@yahoo.com
Sent: Tuesday, July 17, 2012 7:48 AM
Subject: Re: Comment about American Girl or Our Site

Dear Ms. Sharpe,

We certainly understand your desire for a My American Girl® doll with
Down syndrome for your daughter, Maddie.  Over the years, we have
received many requests for characters facing various medical conditions
or physical challenges.  We realize that girls want a character to which
they can relate.

All of these requests are important to us, as well as to the people who
are asking to create specific characters.  Although we get our ideas
from our own staff, we sincerely appreciate requests such as yours as
they help us determine if we are meeting the needs of the girls we
serve.  We will continue to do our best to bring you products and
services of the highest quality.  Please watch for new developments in
our catalogues and on our website at americangirl.com.

Again, we thank you for sharing your request.

Sincerely,

American Girl Customer Service
Phone: 1-800-845-0005 or 608-831-5210
Fax: 608-828-4790
Available Monday - Sunday 7 a.m. - 10 p.m. Central Time


--------------------------------------------------------

This message (including any attachments) is only for the use of the person(s) for whom it is intended. It may contain Mattel confidential and/or trade secret information. If you are not the intended recipient, you should not copy, distribute or use this information for any purpose, and you should delete this message and inform the sender immediately.

dollies...

American Girl...I was so looking forward to going to this store...I was so excited to show Maddie all the dollies love...and I had heard that there was a doll for EVERY girl...so this put me over the top...we were at the Mall of America and Maddie and I headed to the American Girl store...Max and Chad headed to Lego land...I could hardly walk fast enough...I have been searching for a doll that looks like Maddie since the day she was born...I have searched the internet for dolls went to little stores, big stores and never have I found a doll like Maddie...it is in the eyes that I have been searching...I have found Down syndrome dolls on the internet but they do not look like Maddie they are wrinkled around the eyes...and they exaggerate Down syndrome traits...and not in a beautiful way...my Maddie is beautiful and deserves a doll that is her and reflects her...I had a blonde hair doll when I was younger and the doll even had green eyes...I loved her...but finding a light brown blue eyed doll with almond eyes has been VERY challenging...so this was it...I just knew I could find the doll...of course Maddie is as excited as me! so we enter the store and I am immediately overwhelmed...by the people the dolls...off in the distance I see a doll with no hair and in a wheelchair...so I thought for sure there would be a doll with light brown hair and blue almond eyes...we walk past the hair salon for dolls...past the coffee shop for dolls we go up and down the escalator...and learn there are a variety of dolls and babies...but in my search I could not find one doll with light brown hair and blue almond eyes...so a sales associate stops me and asks if I need help...I ask if they have a doll with Down syndrome...I am not sure why time goes into slow motion at this point but it does...she says no but we have a doll that has no hair! I giggle at her and say Maddie has hair! I need a baby with light brown hair and blue almond eyes...she said no but maybe someday...someday does not work for my little girl...today I need a doll that looks like her...her favorite doll is on its last leg! she is a Japanese doll with almond brown eyes and black hair...which she has successfully eaten...I know gross but it is a habit we are trying to break...her other fav doll has bright pink hair also that she eats quite frequently...i know Maddie does not care...but I do...I bought her a cabbage patch doll with light brown hair and blue eyes, glasses and cute dress that matches her...but she has not taken to this doll...the love of the cabbage patch doll -is not...I love cabbage patch dolls when I was a kid...so we left the American store with no doll...with no representation of Maddie...I will not settle for a doll that is not perfect...I have this thing about dolls...I love them and I want my daughter to have the perfect doll to love and help keep her safe...I am not sure if American doll can call themselves American doll when it does not represent all American girls...really it would not be hard to make a light brown blue eyed doll...with a touch of almond...

mini me...

“you know I don’t want a baby like yours”…yeah someone said it! to me…offensive as this sounds…it was not…I just shook my head and rolled my eyes…for sometime now I have been struggling with bigger issues…my ego…who am I, where do I fit in…when Maddie was born I tried to grasp and cling to people I could trust…people who had been a part of my pre-Maddie life…when I became a mother for the first time…I was so proud of myself…I thought I could do anything…I help create this beautiful person…Max has been handsome since the day he was born…a great physique, smile, long eye lashes…perfect health…and now that he is older he is smart, funny, likable…and a great big brother…I have always looked at him and thought…how great I was because of him…I helped create him…I helped raise him…he was a product of me…when he misbehaves I internalize this and wonder what I did wrong in parenting him…becoming a mother consumed me and I began to identify with only being a mom…so when I had Maddie…my ego was gone…I created--no longer was there a –we- created…it was a me issue…I created a person I could not understand…that I could not empathize with…someone I could not look at and identify with … this is not a mini me…I felt I did something wrong and was less of a women...I have always wanted a little girl just like the little girl I was…precocious, naughty, cute, funny, full of drama and wit…and then I had Maddie…all these things I just thought would never come to fruition…I remember thinking to myself…I will never be fulfilled or challenged in parenting Maddie…because she will always be sweet, kind, nice, well behaved, she will just sit there and look like she has Down syndrome…as ruthless as this sounds…it was my truth…and the voice in my head…I have had some time to think lately…to gather some perspective on my misconceptions of mothering Maddie…for a lack of a better words…I was wrong…dead wrong…Maddie has and is the most precocious child I have ever met…she is not what I would call nice…I would not call her happy…I would call her impatient…I would call her annoyed at my existence on a regular basis…she is 3 and already I get on her last nerve…as she grunts at me and stomps her foot…with a turn of a hip and head and a eye roll to top off her utter disbelief that I have told her no or tried to help her…Maddie is a mini me…but better…she can make grown men weep and talk like a baby…she makes old women squeal…and she has captured the hearts of almost every person that has come in contact with…she is not forgettable…or just a person born with Down syndrome…so the other day when we were at the Doctor…the nurse was asking questions and getting annoyed with me and Maddie…neither one of us was giving her much attention...I was not in the mood…everything is in her chart…just read it and you will understand! and then she asked “how is she doing?” I know a pretty standard question…but one that pisses me off…how is Maddie doing? I asked again…then followed up the question with --in what context are you referring to? her health and if so what part of her heath? heart, esophagus, thyroid, acid reflux, etc..her development? physical, social, emotional…what is --how is she doing mean it is a very loaded question…they want me to say fine…but fine is not good enough or it really does not tell the story of Maddie…with the nurse not liking me questioning her…she asked if I was even her mother…now that question pissed me off…that question offended me…because I get being scared that you can not cut it as a mother to Maddie and wanting to “try” to prevent "it"…but to be asked the question if I am her mother…as I am holding her in my arms…that is when I call foul…that is when mama bear rises…Maddie is a mini me…she talks like me...she walks like me…she looks like me...and she is comfortable with me...we are inseparable...if anything Maddie is the best thing I have ever done in my life…and to question me as her mother is just offensive…and it is with out question inappropriate...I wanted to ask her why she would ask such a question...but once again you can not fix stupid…

Beyonce WhOOOO???

another first...

well well well...I guess I survived the first day of BIG girl pre-school...and so did the Maddie...

uni-brow...

there is always a question on if you should ask a VERY shallow self serving question...should you be that mom...should you be that vain in public--out loud...should you say this...should you ask that...well...I did...I was that mom...Maddie had her dilation Friday...I have become very comfortable with the doctors, nurses, anesthesia, check in attendants/specialists, and cna's...they know Maddie; she knows them; I know them...we talk family, life, and shop...they call her by name without hesitation...fill her charts without question...it has become so routine...and "normal"...and then I did it...I asked...Chad mentioned that Maddie was developing a uni-brow...and Maddie is starting pre school Wednesday...so I told him...I was going to ask my favorite nurse to pluck while she was under general anesthesia...or if I could pluck...what I did not expect was that I would have to get clearance from the doctor and anesthesiologist...so I did it anyway...the nurse understood my annoyance of the uni-brow and the trepidation of plucking while she was all squirmy wormy...and she said YES! and laughed...I asked the doctor and he said yes and asked if I wanted to throw in a pedi...and anesthesiologist said he would paint her nails to match her toes...so all in all it was a win of a day...Maddie got her eye brows did...the staff got a laugh and I got out of the torture of plucking them myself...oh yes and Maddie's esophagus is staying where it should so we are officially off the every 3 week rotation and are going to a 2 month esophagram here in Casper....and yes I have officially become that mom! toddlers and tiara her we come!