Monday, November 25, 2013


BeeBee is how Maddie refers to her baby doll...this doll is one of the most important items in our fact I almost feel guilty in referring to this well loved baby doll as a item...something that could be thrown away or replaced...this baby has been with Maddie since the beginning...when I found out about the extra chromosome I bought nothing for her...I was so consumed with just trying to keep myself sane that I did not want to fuss about anything including bedding, clothes, toys, nothing...we were not sure Maddie would live...we were not sure of much and I did not want any reminders of her if she was to pass...and then one day near the time I was to deliver Maddie I went to my favorite shop here in town...Country Charm...a small local store that has meaning to me...and I bought a blanket for her...a pink silk and fuzzy was perfect...Maddie was born and the blanket was placed with her from the moment she was born and is still in her bed when we came home from Denver I had this strong urge to get Maddie a doll...not clothes or a bed....I had to find the perfect baby...I wanted one that looked like that she would love and keep her safe like I had when I was a we looked all over the Internet, Denver, and then I found it at a locally owned toy store and it was perfect...the hair...the eyes...the smell...perfect...Maddie has had this baby since she was a baby and it has been through every hospital stay, every vacation, every night of sleep...this baby has been to DC and often goes to therapy and camp and even the lake...every morning you can hear Maddie saying good morning to BeeBee...if she puts baby down and returns she always greets baby with a Hi BeeBee a hug and is the first thing she seeks out when she returns from school...this baby has seen it all and has been thrown up and washed more times then I can count and still has the smell of when it was first placed in Maddie's is not something I will try to replace or take is not something I want her to grow out of...the baby is a huge part of the family that even Max is careful to keep a watchful eye on it so it is not forgotten...the blanket and the doll mean more then a monetary value...the blanket was bought to wrap my baby in no matter the outcome....the baby was purchased to protect my baby and always give Maddie has gotten older her baby has learned to dress it self, go potty on the potty, dance, do treatments with her and love to be a perfect sidekick to my girl...

Wednesday, November 20, 2013

What does therapy look like????

What does Maddie's intensive therapy look like...Maddie has therapy at school and then school she receives speech, OT, and PT...3 times a week at various times and in various settings...sometimes in the classroom along side her classmates and sometimes pull outs...but her private therapy is what takes the cake and why we have seen a huge improvement with Maddie in skills and speech...Maddie goes to ACM Monday - Friday for an average of 6 hours per is some of the examples of therapy that she is exposed to weekly:
-Real world therapy this means she goes into the community and participates in everyday things such as grocery shopping, department store shopping including dressing rooms, going to the store like hobby lobby with the list and getting the items to perform the activity, sitting and ordering and eating in a restaurant, how to act in public by walking, holding hands, talking with people who talk with her, exposure to life in general.
-Field trips this is anything from the movies to pumpkin patch, llama farm, airport, mountain, pottery by you, park, pedicures, you name it they will or have already done it!
-Maddie receives feeding therapy everyday at ACM she eats family style with the staff and kiddos...learning to chew, try new things, she helps make her own lunch everyday, washes hands, uses utensils, cleans up after self, etc.
-there is breakout one on one therapy in speech, OT, PT this is filled with expectations and goals that Maddie will meet...this is them pushing her along and making sure she is ready to enter school and life
-group activities this is where Maddie is with other kiddos and has organized games, activites, play and receives guidance from staff and sometimes therapists to work on needs of all the kiddos...
The ACM staff is amazing and they work with Maddie and us closely to make sure Maddie is getting what she needs from her day to be successful in life...

This is a typical week for Maddie without more therapy...we would have not seen the growth for Maddie...again if I could turn back what I know now...I would push for more speech earlier...because as a society we put your worth on what you can offer others...Maddie has to be able to communicate her needs as well as reciprocate the needs and wants from others...through this I have discovered that being practical with Maddie has been good for my outlook for our future...setting Maddie up to fail because of my ego only hurts Maddie and my heart....asking others for help with Maddie's development is now our reality...the best thing we could do for her...

Monday, November 11, 2013

Update of sorts...

I suppose this is a update of what's been going on with our busy growing girl!

Academically Maddie goes to preschool Monday thru Thursday for 2.5 hours...she has speech, pt and ot 3 times per week...we like the preschool setting because it gets her ready for a school environment...lining up, drinking fountains, schedules, teachers, and daily expectations...after her day at preschool she is bussed to her intensive therapy is truly amazing she receives one on one to small group therapy all the rest of the day working on speech, ot, and pt...she goes out in the community and receives therapy by going to stores or going to a museum...even eating at restaurants and how to eat and act properly...she even swims weekly and focuses on how to swim/breathe and speech and of course lots of play! I tend to mother or you could say baby Maddie to they push me along and have potty trained her and encouraged her be more independent...always reminding me that Maddie is a child first...because of this intense schedule Maddie is doing amazing with her speech, writing and endurance...Maddie is still amazing us everyday with her knowledge and spunk for life...also with this is a struggle of what we want for Maddie...and what is reality...We want Maddie to be mainstreamed into school...but as time goes by and we see Maddie for Maddie And we understand that may not be the best route for Maddie...only time will tell and we have a year before we have to a make that decision...but for new mamas out there my only advice would start intense therapy sooner not later and work on speech...your child will run!

Maddie's health....well is that not the million dollar question! Maddie is in pretty good health for Maddie...her esophagus has stayed open for 1 year...this is huge! It feels like a lifetime ago we were fighting this battle...but we traded in the esophagus issues for trachea and lung issues...she still receives vest, nebulizer, and steroid treatments 2x daily...this helps with the excess mucus...Maddie caught something a month ago and we are still trying to get it killed! So we are on antibiotics probably throughout the winter to help with the mucus in her lungs...of course this is a concern for us but it is manageable at the moment...Maddie is still on oxygen at night...but she hates it and rarely keeps it on...her last sleep study came back that instead of stoping breathing 11 times an hour after her tonsils and adenoids came out she only stops breathing 4 times per hour...this is a huge improvement...but the oxygen will stay put...Maddie still is having thyroid issues with stabilizing her numbers...but I hear this is typical with youngsters...Maddie is also still on her biotin for her 20 nail dystrophy and has not lost anymore nails and they have stop peeling off...and in big news her hair is starting to grow! Yeah for progress!

Maddie's diet...this has been a full family affair! We have all changed the way we eat for the better...and are regularly being active together...going to the park....or even just dancing around the house....we have switched to 1% milk and only 2 glasses per day...she is back to baby food vegetables and some fruits...I need her to get the nutrients but the girl will not eat a green bean or anything green for that matter! She will eat lettuce but only smothered in ranch! Speaking of ranch we make our own low fat and so Maddie can still enjoy dipping! The biggest change for Maddie's eating is her lunches...before I would take the easy route and pack her canned ravioli or spaghetti ...not anymore! She gets quesadillas with low fat cheese...home made pizza with  low fat cheese and a crust of the whole grain crust bread...if I pack spaghetti it is home made...I have also started packing her Meat with cookie cutters to make it fun! her lunches no longer have milk or juice but water....this change has helped with her acid reflux and her tummy size! But I have taken a stand and I am not submitting my meal plans to her doctors...I figure they can trust me to do right by my daughter!

So here we are mid November and me and Maddie are just looking forward to Thanksgiving and the upcoming Elmo show!