Friday, September 30, 2011

I made a friend

I was volunteering in Dariya's preschool class on Tuesday and a parent of one of the typical little girls in D's class stopped me and asked if I was Dariya's mom.

This parent went on to tell me that her daughter LOVES Dariya and talks about her everyday and is excited to go to school to see and play with Dariya.   

Now mind you Dariya plays well with kids just as she did at the orphanage but, she doesn't seek kids out to interact or play with like Alayna does.

I witnessed this sweet little girl talking to Dariya and getting Dariya to participate in dancing during music class.  "Come on Dariya, let's Dance"  Oh be still my mama heart!  My girl who has only been here in the country for 2 1/2  months is liked and has a friend.

You can't imagine my joy in watching this interaction and hearing this news.  I was so thankful that this parent shared this with me.   

We all want our kids to have friends and be a good friend but as a parent of children with special needs, Jason and I pray that our girls fit in well, make friends easily and use their God given talents and strengths to reach their highest potential.

Now to transfer this friend making skill to the school district and get her interacting with her classmates there.
Oh, how I love her!

If you are joining us for the Step Up for Down Syndrome on Oct 29th and want a T shirt with our team name on it -  "All for one 21 for all...the Cannon and Heigele families "you must register by TODAY (Sept 30th). Click the link above to be taken to our page!  See you at the walk.

Friday, September 23, 2011


Juanita, do you know this look????? Picture is from May 2010
Last week, Juanita (the girl's preschool teacher at the school district) called to tell me that Alayna wasn't participating in their class.  Not during story time, music time, craft time or playing on the playground!  Every time she saw Juanita Alayna would cover up her eyes.

Juanita was concerned that Alayna's goals would be way under where she is performing due to her not showing them anything.  As Alayna is excelling at her preschool class at the LeeAnn Britain IDC center I requested that Juanita observe her there to get an accurate place to start with her IEP goals. 

Juanita sweetly obliged and came to visit the girls yesterday at IDC.  Alayna was in circle time participating UNTIL she saw me then she double took and saw Juanita and immediately her hands went over her eyes.  Stinker!  We are trying to dispel the myth that people with down syndrome are always happy and totally compliant.  LOL

One of the therapist did her best to keep Alayna from noticing Juanita but, she definitely shut down and did not participate like she usually does.  When it was time for music Juanita and I watched from the observation window and Alayna popped back to her normal self, singing, dancing and participating with ease.

We are going to try to outsmart Alayna and video tape her in class at IDC next week so that the school staff has an accurate view of who she is and what she can do. 

We are prayerful that in a couple weeks when Alayna turns 3 and is only at the school district that she will be comfortable and blossom like she has at IDC.

Don't forget if you are joining us for the Step Up for DS this year to have a tshirt with our team name on it you must register by next Friday Sept 30th.

Also,  please visit the Fristoe's and pray, donate & share just $10 to their iPad2 & iPod touch giveaway.  They are still needing about $15,000 to bring her home.

Monday, September 19, 2011

You are pretty sure you are potty training if...

~You have half naked preschoolers roaming around your house carrying their toilet seats.

~While in speech therapy your preschooler is playing with a dollhouse and when asked by the therapist, "what do you see?" preschooler proudly announces, "potty" then of course has to make every little person in the family set pretend to use the potty and wash their hands. (Alayna)

~If you added up the minutes that you spend in the bathroom in one day (while said preschoolers are using the toilet) you are sure the total would be more than 23 ½ hours worth.  Yes, running down the hall back and forth between bathrooms while said preschoolers are on their own toilets counts.

~The sound of anyone using the toilet elicits maniacal clapping and hoorays from the preschoolers in your home.

~The sound of the flush elicits shouts of "bye bye" (Dariya)

~You are overcome with bursts of crazy laughter, shouts and happy dancing that you don't have to change dirty diapers.  (Please tell me this is normal or am I the only one?)

Potty time is going well at our house.  At the orphanage Dariya was placed on the toilet 4 times a day.  She would not let them know when she needed to use the toilet.   Dariya did not enjoy sitting on the potty for them and would cry.  We witnessed this the first day we met her and her crying fit broke my heart.  We think she had to sit there until she produced something (saving on diapers remember?).  At that point she didn't know how to push and control the event.

When we first arrived home I put her on the potty a few times but didn't have a schedule as she was rather traumatized by the potty experience from Ukraine.  I just let her watch Alayna and help cheer lead for Alayna.  Well what do you know.  Peer pressure really does work.

In the two months Dariya has been home she has gone from not wanting to try to use the toilet to understanding the process and being able to control when she goes.  She lets us know the majority of the time when she needs to go.  She will put her potty seat on the toilet and pull her pants down when she needs to go.  She will sign all done and say done when she is finished.  She knows how to push and control the event now and will sign more when she is not finished.  She is keeping her pull up dry each morning while in preschool and uses the potty for her teachers appropriately. 
At preschool and in the preschool room at church Dariya has been telling them when she needs to use the toilet too!  YAHOO go Dariya go!

Next step - Panties while we are at home!

Hope your potty training adventures are going well!  We would love to hear how it is going at your house and any tips or secrets you have learned.

Wednesday, September 14, 2011

Abandoned and rejected: We need your help

Do not be afraid, for I am with you; I will bring your children from the east and gather you from the west. I will say to the north, "Give them up!" and to the south, "Do not hold them back." Bring my sons from afar and my daughters from the ends of the earth" Isaiah 43:5-6
 This is Clare, she is 4 years old.  She was found abandoned and rejected  in 2007 in a public area in China because she has down syndrome, cleft palate and other health issues.   She was placed in an orphanage, while a search for her parents was done.  Her parents were never found so she was admitted as a resident. She was then sent to China Little Flower, a healing home--run by a church in Nebraska, for hospice care. 

A g-tube was placed for feeding and instead of dying, she got stronger.  She has had 4 very close battles with death from pneumonia. She is now on "palliative care", which means she is not allowed to see a doctor.
Her oxygen levels are in the upper 70'-80's (normal should be 97-99%) and 40-50% when she is sick. Little Flower does a great job of keeping her alive. She is the oldest child there.    She has down syndrome, cleft lip, cleft palate, CHD, VSD, PFO, PH, tricuspid valve cleft cusp, tricuspid valve back flow, g-tube.

Clare has never eaten food, instead has only received pediasure through her g-tube. Clare doesn't speak or walk, but has started trying to.  This girl needs to get to the US asap to get the much needed medical care that China is unwilling to give her.

Fast forward to today, Clare has a forever family, Dewey & Suzanne Fristoe right here in Kansas City are working desperately to bring her home.    They aren't newcomers to the ds and medical complication world either.  Their youngest daughter was born with that extra chromosome and multiple heart defects. 

If you were at the airport for Dariya's homecoming you probably met Suzanne.  She was one of the first people to email me and volunteer to be at the airport to video or take pictures or whatever we needed.  She has a servant's heart.

They have completed all their paperwork and are awaiting their immigration clearance from the United States.  China has already agreed to expedite Clare's case due to her immediate health concerns and need for surgery. 

Only thing stopping them from bringing Clare guessed it MONEY!  They are still needing to raise around $16,000.  They have done bake sales, garage sales, benefit concerts and have applied for grants.  This family is looking to travel before or around Christmas.    They have bought an iPad2 but only have $250 worth of donations to their fundraiser!

I am pleading with you to pray for this family, visit their blog, Our Chinese Butterfly and support their iPad2, (32 gb wifi) & iPod Touch, (8gb 4th generation giveaway).  Just a $10 tax deductible donation via Reece's Rainbow.  You can also donate other prizes, blog/FB/Twitter their giveaway and help them get the word out.    They desperately need help. 

If we stand alone we can do nothing but, together as the body of Christ can do amazing things. 

Clare knows her family is coming.  Here she is opening her care package from them.
Do you think she is thrilled to be getting a family or what?

Won't you stop by and help be part of Clare's homecoming story?  Our Chinese Butterfly

Speak up for those who cannot speak for themselves…defend the rights of the needy. Proverbs 31:8,9

Monday, September 12, 2011

Break my heart, big girls ride the bus

Today was the girls' first morning to ride the bus to preschool.  They LOVE watching the bus, talking about the bus and I was sure they would be thrilled with riding it too. 

Well, our morning was one of those mornings that you just want to crawl back into bed and start it over about 2 hours later...or maybe 2 days later.

About 15 minutes before the bus arrived Dariya was all ready and I was trying to get Alayna finished up.  Alayna fell on her bum (not getting hurt) but was still crying when the bus arrived.  So needless to say when I had to put her on the bus and let the aide Grandma Mary (she seriously was a sweet grandma) strap her into her car seat she was crying for me. 

How that broke my heart to have to leave her and walk away.  Alayna is usually very happy and excited to go to school so that made it even harder. 

I let Ms. Juanita know that Alayna was having a moment and haven't gotten a call from her yet so prayerfully Alayna is happy as a clam now and is doing just fine. 

Say a prayer for my heart and for Alayna to have a great day!  Thanks.  Hopefully when they ride the bus again on Friday they will both be HAPPY!

Wednesday, September 7, 2011


Aidan was out of school for teacher inservices so we took the opportunity to have him evaluated by an orthodontist. 

Last month at Aidan's regular dental appointment Dr. David noticed that as Aidan's adult teeth are coming in his bite is really off.    He has some top teeth in font of his back teeth and some behind them.  He has 2, possibly 4 teeth that have fused together.  Also, as his teeth grow in they don't have room so he will have a palate expander for the next year to increase the space for his teeth.

In the upcoming weeks he will have 3 yippee more doctor's appointments to take pictures, place expander bands and make casts for a palate expander, on the final appointment they will place the palate expander and a partial row of top braces to get his teeth in line.  Once his teeth are straightened he will wear a retainer only at night to keep them in line until he looses all his baby teeth at around age 13 at which time he will have a full set of braces.

As the girls were in preschool,  I took the opportunity to have a date with my sweet 8 year old after his appointment.   He chose our county museum for the morning then to walk around a park with a nice lake.  It was a beautiful day and we enjoyed some Mom and Aidan time.

Hopefully this time next year all those teeth will be lined up all nicely! Even with an overbite I think he is the most handsome 8 year old on the planet.

Sunday, September 4, 2011

Calling all Steppers...

The weather is getting cooler and fall is in the air.  That means more outdoor fun, football and of course the Step Up for Down Syndrome.   

Click on the picture to join or donate to our team

The Kansas City Step Up Walk!

We are amazed at how God continues to bless us.  First with Alayna & LC being NICU buddies, born one day apart and the amazing friends He placed in our lives in Courtney & Justin.  Last year Jace was added to the mix now Dariya has come along to add to the party.   

We hope you are able to join us for this awesomely fun day in which we celebrate all our sweeties with that extra 21st chromosome!  You can join our team and/or donate up until the walk day but if you want a cool tshirt with our team name on it make sure you register by September 30th!

100% of the proceeds stay in Kansas City to benefit the Down Syndrome Guild of Greater Kansas City. The DSG serves over 1100 families and partners with 22 hospitals, 45 school districts and countless service providers in Kansas and Missouri.
Every dollar raised helps the DSG continue to provide vital programs and services offering educational and social support to people with Down syndrome, their families and the professionals who serve them. Important work waits to be done to enhance research, education and advocacy programs. Your support is critical in making these programs a reality.

We have many great family fun activites planned- inflatables for all ages, rocking climbing wall with NEW this year, -bungie pods. Pony rides, crafts, carnival games, clowns and so much more..

Get ready for some family fun- Radio Disney will be on stage, along with the BEST Network's Star Performers!
9am-11am: Registration
9am-1pm: Family festivities & Radio Disney on stage
10am-Noon: Lunch- Hamburger/Hot dogs
10:45am: Awards & Announcements
11am-11:20am: BEST Network Performance
11:30am: Kids Dash (age 5 and under)
11:40am: Color Guard/National Anthem
11:45am: Walk begins with KC Wolf
1:00pm: Event concludes