UPDATE ON COURTNEY, SLEEP APNEA & BI-PAP MACHINE

Courtney has been using the Bi-Pap machine for about 4 weeks now and her progress has been really great. Here it is in a nutshell:

First week: Tolerated the mask for about 1-3 hours per night, stayed in bed ALL night but still woke up several times a night.

Second week: I moved off the air mattress in Court's room and back into our room. (happy!) Tolerated the mask for about the same amount of time but now Court is taking off the mask and turning off the machine. Still staying in bed all night. 

Third week: Court is continuing to take off the mask off and turning off the machine. And still staying in bed all night. Not waking up as frequently.

Fourth week: Court is keeping mask on longer about 5 hours per night before taking it off and turning off the machine. Seems to only be waking up 3-4 times per night. Court seems to have more energy throughout the day. 

I am really hoping that by the time school begins Court will keep the mask on all night but right now even the 5 hours is making a difference. I have to say I am really enjoying sleeping in my own bed and NOT playing musical beds every night and Court not getting out of bed several times a night! :)

COURTNEY, SLEEP APNEA & DOWN SYNDROME

DO YOU READ "PARENTING SPECIAL NEEDS MAGAZINE"?

I was reading the current digital copy of Parenting Special Needs Magazine and came across I really great article on "Tips for Encouraging Your Child Toward Independence".


Here is an excerpt:


TEACH HER SELF-AWARENESS by Chynna Laird
Self awareness involves, not only teaching your child what she's dealing with, but also how things affect her, what tools she needs to thrive and all the "why's" in between. Of course, teaching this depends greatly on your child's developmental stage, ability to understand and the level as well as complexity of her condition. I started talking to Jamie about what she was going through from the moment someone started coming to our house to work with her. Obviously, at 2 years of age Jamie would not have understood any of the technical jargon. But I helped her understand that this wonderful woman called an OT was coming over to play so she'd feel better about stuff. As time went on, I shared with her all the things I was learning from out fabulous sensory team--at her level of understanding. Teaching self-awareness is also the step in the direction of educating your child how to advocate for herself one day.

I wanted to share the article link here and well as the link to sign up for this free digital magazine here.


It's so important to explain to any child the "why and what" that is going on. Just because your child may not be verbal and ask questions doesn't mean they don't want to understand. With our daughter's doctor appointments a conversation may go something like this (Court is 12):


Me: "Court today we are going to the doctor."
Court: "Shots?" (this means shots or any lab work)
Me: "The doctor is going to check your to make sure your are healthy and strong."
Court: "No shots!"
Me: "You might have to get a shot but that's ok because it will make you healthy."
(I wait for a few seconds to let her think about it)
Me: "It's OK to be nervous or scared but it only takes a minute and your done."
(Pausing for Court to continue to think about it)
Me: "But your a big girl and you'll be just fine and mom will hold your hand."
Court: "OK I want a shake!"
Me: "After your doctor appt we will get a shake."


I have learned NEVER to make Court promises of no shots because even a well-visit can turn into a full blown visit with x-rays and labs. So I just let her know that I'm not sure. With Court I try to be straight to the point and direct. Also when in the doctors office I ask quietly to the receptionist (while Court is sitting down) that the nurse and doctor address Court FIRST. After all she is their patient not me. I always encouraged her to shake their hand upon meeting and include her in the conversations with doctors/nurses about her health. I encourage Court to answer questions the doctor has before I just jump in. This has worked really well for putting Court at ease. Also on the point of "stranger danger" before the examination even begins (past the weight/height point) I tell Court: "Court the doctor/nurse has to check your body but only because Mom is here. No one else is to "check" your body." Then usually the nurse/ doctor will say something like "That's right Courtney I am checking your belly, legs, etc." I want Court to be engaged when it comes to her health. I want her to be treated with respect & dignity. 


How do you handle doctors appointments, etc...and explaining the "whats & whys?"

Missourian Story!

‘Just Like Rainbows’ was featured in the Missourian today.

The Franklin County DS Group is so excited to be featured in bringing awareness to Down syndrome. 

FAMILY DAY: ICE CREAM SOCIAL!

WHAT: "MaKe YoUr OwN IcE CrEaM SuNdAe"

"CrAfTs"

"KaRaOkE"

WHEN: AuGuSt 13

TIME: 2:00 pm - 5:00 pm

WHERE: GaTeWaY CeNtEr FoR tHe ArTs

washington mo

RSVP: Shawn 636-744-3762

or email franklincountyds@yahoo.com

Bring the WHOLE family!

(please let me know of any food allergies so I can be sure to have something for everyone!)

AUGUST PLAY DATE! MOVED TO MICHELLE BOWEN"S HOME!

MOVED BECAUSE OF HEAT!!!

Moved to Michelle Bowen's House! 

1001 St. Andrews Drive 

Union MO

Same time and bring a snack! 

WHAT: PLAY DATE!

WHEN: AUGUST 2

TIME: 11:00 AM

WHERE: UNION PARK ACROSS FROM POOL

Bring a sack lunch!

You'll see yellow and blue balloons!

FRIENDLY REMINDER: MOM'S NIGHT OUT TONIGHT!!!

(In lieu of our Monthly Parent Meeting!)

MOMS NIGHT OUT!

THURSDAY - JULY 7th

6:30 PM 

VALLARTA MEXICAN RESTAURANT 

1555 DENMARK RD

UNION MO

Leave the kids home with the husbands and let's have a little fun!

Please RSVP.

Shawn Sullentrup

636-744-3762

franklincountyds@yahoo.com

HAPPY 4th of JULY!!!

HAVE A HAPPY & SAFE 4TH OF JULY!!!

and if you want to share some pictures of the kids for the blog please email them to me @

franklincountyds@yahoo.com

NEW STUDY UNDER WAY ON SLEEP ISSUES & DOWN SYNDROME!

A portion of the article...

Research under way at the University of Arizona is revealing a connection between quality of sleep and the learning and memory functions in children with Down Syndrome.

"It's well known that children with Down Syndrome are vulnerable to developingsleep apnea which results in pauses in breathing," UA psychology student Jennifer Breslin says. Breslin has been conducting a study looking at children with Down Syndrome and the occurrence of sleep apnea.

"if we can demonstrate that kids with poor sleep have poor cognitive outcomes, we can make a case for intervention and ultimately improving their behavior and learning ability," she says. "If we could give these kids a better quality of life, that would be awesome."

You can check out the entire article here.

Of course with Courtney being recently diagnosed with sleep apnea I will be very interested in the findings of this research. I already emailed to see if Courtney would qualify for this research.

CHALKBOARDS!

I love chalkboards and have always wanted one in my kitchen just to write little notes, quotes or reminders on. I was one of those kids that loved getting my name called so I could go in-front of the class just to write on the chalkboard. Yep one touch of that silky white chalk and I was hooked!  Since most schools have dry erase boards now the chalkboard is kind of a novelty with kids. Any kid that comes to the house can't wait to write on it and Courtney is no exception. But little did I know what a great learning tool the chalkboard would be for Courtney. 


While Courtney does have workbooks, flash cards and all that good stuff her favorite it working on the chalkboard. So she will practice everything from weekly spelling words to recipes to math skills on the chalkboard. The chalkboard is different and interesting to her and honestly it's just plain fun to write on with all the brightly colored chalk. 


RECIPES: I will ask Courtney a recipe she wants to write and she chooses whatever she would like. Then she will write the title of the recipe (with spelling assistance if needed). Next I will ask her "what do we need to make ____?" Courtney will begin to think about is needed. 


WHAT TIME IS IT?: I will draw a clock for Courtney and she or I will fill in the numbers 1-12. I will ask her to draw the hour and second hand to specify the time I have given her. Sometimes she will tell me the time she is going to draw and other times I draw the time and she has to answer what time I have shown on the clock.


WEATHER: Courtney and I will talk about the date then I will ask her to give the weather report. She will write on the chalkboard if it's sunny, cloudy, rainy, hot, cold, windy etc. Then she will also write what she should wear because of the weather.


MATH: Courtney answers one digit addition and subtraction problems without the aid of a calculator on the chalkboard. 


CHORES: Courtney has regular chores and will write them on the chalkboard and cross them off as she finishes each task.


And in 7 months of having the chalkboard, Courtney will write little notes to us (unprompted). Sometimes she will write she loves her sister Alex or her family or maybe she will cross out what I wrote for dinner and replace it with McDonalds! 


These are just a few of Courtney's favorite activities to do on the chalkboard.


Skills Used: Memory, Writing, Spelling, Occupational, Cognition, Life Skills, Math, Speech, Language, Social Interaction, Responsibility