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 place...it 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 much...so 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!
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 place...it 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 much...so 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!
I love this update! I couldn't agree more on the intense therapy and speech at a younger age. I wish I would have pushed for more services for Sutter when he was little rather than go with the 'he's just a baby' attitude. We can't go back though so making the best choices now and pushing forward is all we can do!
ReplyDeleteAs for the eating and food changes you've made, you ROCK! It's hard to make changes but over time they just become the new normal. I made really yummy enchilada sauce last night and snuck a ton of veggies in and they never blinked an eye - 1 sm can green enchiliada sauce, 1/2 container of fat free sour cream, 1 whole raw zucchini, 2 handfuls of raw spinach and a clove of garlic all in the blender and blend on high until smooth...I made layered rather than rolled chicken ench. casserole and both boys gobbled it down never questioning the bright green color. :)
I agree. Do not submit your meal plans. The only reassurance they need I'd Maddie's progress.
ReplyDeleteI love this update, too!! Wow, leaps and bounds for everyone! Love your new profile pic, too, although it's probably not new - I've been so behind in my blog reading over the last few months. :-( Your girl is doing amazingly. I hope her health remains stable through the winter! (((hugs)))
ReplyDeleteLoved this post. Maddie looks so happy/naughty in your profile pic. And Max looks like a gentle giant. Love those kids:)
ReplyDeleteWhat is intense therapy? We get the run around out here (CA) and we hardly even get speech. Any tips would be greatly appreciated!!
ReplyDelete