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Hi. I am Elizabeth. 

Welcome to my blog. I use this little space to chronicle the adventures of the Noel family!

Guest Post: Kim Knight

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Hey friends!

I haven't fallen off the planet- I promise! I have been at the first Ruby's Rainbow Retreat this weekend! Don't worry- a post is coming all about it, once I unpack it all! 

Today, my friend and former boss, Kim Knight is sharing about one of the things that all parents of kiddos with down syndrome have to juggle- scheduling. We are constantly trying to make all the therapies, doctor appointments and school fit into our already hectic schedule! Thanks to Kim for contributing to my Down syndrome awareness month content! Follow along with Kim's awesome family at @kimberlydknight on Instagram!

Most people wonder what is the biggest difference about having a child with Down syndrome.  I think my answer would be our daily schedule.  EVERYTHING revolves around Max’s therapies.  Max is only 3 but the hours and time he puts into his personal learning is amazing.  Max has to work much harder than a “typical” child to master things.  Every week, his life is full of school and therapy. At school, he receives 90 mins of Speech and 30 mins of OT every week.  However, we all know that early intervention is key to success.  He has 5 sometimes 6 private therapies a week in addition to school.  He is only 3 and he still needs naps as well. Some days are shorter than others but we manage to get one in every day.  

A week at a glance:

Monday:  Special Needs Pre- K from 7:30-11:50

Tuesday:  Special Needs Pre- K from 7:30-11:50, OT Aquatic Therapy from1:00pm- 2:00

Wednesday:  Special Needs Pre- K from 7:30-11:50 PT from 12:00-1:00 and Speech from 4:00- 4:30

Thursday:  Special Needs Pre- K from 7:30-11:50, Speech from 12:00-12:30 and OT 3:00- 4:00

Friday:  Special Needs Pre- K from 7:30-11:50

 

This week Max has a Doctor appointment on Wednesday.   He had to miss school two weeks ago to go to the ENT and to have his blood drawn.    I only go to the children’s hospital to have the blood drawn since they are trained in little veins that do not like to cooperate.  His doctor’s appointment this week will cause him to miss school on Wednesday so we can drive downtown to one of the best endocrinologists in town.  All the while, his little brother needs to get to preschool.  Luckily, we have grandmama very close.  She is always willing to help in whatever way she can! We definitely need our tribe to help get it all done!

I am in no way complaining about our schedule only trying to inform. I am forever grateful to my husband who works so hard.  This allows me to stay home and make sure both Max and Ben have all their needs meet daily.  

 Max is in good health with no heart issues. Max was thought to have had a hole or two in his heart while in utero.  With the expertise of the Sibley Heart Center in Atlanta, it was determined that his heart was perfect.  After birth, they checked again and indeed his heart was perfect!    Many children with DS have heart defects which is usually corrected by heart surgery.  It is to the experts in their field that we are forever grateful.  Max has an amazing tribe of dedicated doctors who help support his growth and well-being.  He sees a developmental pediatrician, a urologist, an ophthalmologist, an endocrinologist, a pediatrician, an ENT, and an audiologist.  Max is #mighty and he works so hard each and every day!

Until next time, friends...

More Alike than Different- Part 1

To our two who rock an extra chromosome...