Anna and Roma doing music therapy on a visit home

Roma LOVES her music! We wish we could find a way to get music therapy at Anne Carlsen for Roma. She has it video taped and watches her sessions over and over… We have our fingers crossed that this will happen sometime soon.

 

Who came to see Roma and brother Rylan?

Because you are the best kids in the world!

Roma and Grandma Kay!

Grandma LOVES anytime with Roma and looks forward to her visits in person or on the phone. Roma makes sure to call grandma every night before bed to laugh with her and say her prayers. She usually calls her in the morning for a quick song before off to school too. Roma loves to talk on the phone like most girls :).

Roma gets another Amanda for Christmas…Kait wants one too :( sorry Kait.

 

Roma and Kaitlyn

 

Happy New Year!

Roma has been doing so well at AC! She has lost 17 pounds total and they have been working on some pretty great treatments for her respiratory issues that we have battled her entire life. Roma has always dealt with pneumonia concerns and often ended up in the hospital when she got a cold (which seemed to be very often). With the many different ways they have been able to monitor her on a daily basis and (as a nurse said on day "bounce ideas off each other" unlike a mom can do at home) we are slowly coming up with what might be the answers to some of Roma's concerns. We will also be doing a sleep study soon to find out how she does with her breathing through the night on just an average evening...by hooking her up to equipment that will be able to tell if her breathing is compromised at all. Roma also has improved her overall diabetic numbers and is now having her blood sugar tested only twice daily instead of three times...YEAH! She still takes many different medications four times daily and does breathing treatment twice per day but does it all with such a positive attitude.l
I really believe she likes it at AC and enjoys her cottage staff A LOT! She likes to give them a hard time. She doesn't ask much about coming home. Mom tried to make it at least two times a week. Kaitlyn is there at least once a week along with her dad Tim, Grandpa Jerry, Grandma Kay and Bon making the trip as often as possible. She loves to have visitors and she has a lovely room to have you "hang out" in whenever you get a chance to take a drive to Jamestown. We will save more of our "home visits" for summer :). It is a magical place that has made so many wonderful things happen for this little girl...it was a tough decision and still causes an ache in my heart every day...but I know I did the right thing for Roma and that is what matters most. 

Hope all is well with you all. If you ever want to call Roma by phone just let me know and I can get you her number...

Jennifer

Roma's Visitors

Here are a few photos of RomaKay and her special visitors in October.

Roma with Holly's parents, Brian and Kari

Roma with Holly's Uncle and Aunt, Brian and Jenni

Roma's cute room!

RomaKay's visitors said that she looked great and was giddy the whole time they were there.  :)

Roma’s First Halloween Dance

                      
Roma had SO much fun at her first "REAL" dance!! She loves MUSIC and she loves to dance. She never sat down and she danced until they turned the lights on at the end of the night. She was shakin' her hips and gettin' her shoulders almost down to the floor sometimes she had so much excitement. Once she realized the pizza was limited she was all energy into dancing. She really likes her gym teacher Troy and he is SO good to Roma! This is him in the Toga outfit. He was the DJ for the night. Roma was a bit disappointed when she didn't get a prize for the most creative costume or most beautiful costume (mom needs to work on that for next year). Once Troy heard she was sad he ran up, got on the microphone and said, "we have one last announcement to make..."I almost forgot, THE MOST BEAUTIFUL PUMKIN COSTUME GOES TO...ROMAKAY, would you come up and get your crown?" He gave her his crown that went with his costume :)!! He is amazing.
Roma is getting SO many opportunities that she would not normally get to participate in and feel a part of. I know there was a 6th grade dance the same night at the school she would have attended this year if she didn't go to Anne Carlsen this same night...I just can't imagine that she would have had the same kind of night that she had here. It is things like this (and so many more things) that keep us as family assured we have done the right thing for RomaKay. We want the best life for her...
This night also gave the staff a chance to see Roma's personality!

A proud Mom

RomaKay Happy Halloween!

Roma will soon celebrate Halloween with many of her new friend with an Anne Carlsen Halloween Party this Friday which has become a real tradition at the school. They kids get all dressed up and have lots of fun with music and games friends and staff. Roma is going as a Pumpkin this year. Mom and Grandma Kay plan on attending and (hope to be mice in the corner for as long) as possible to watch Roma enjoy the festivities. We may need to come in costume to keep our identity a secret :). It is so great to see her enjoying her new friends and so many fun activities.

October 11, 2010

Just a few photos of RomaKay to share today, enjoy!

Roma and mom out for coffee

RomaKay coloring in her cute room at Anne Carlsen

Roma's cottage

Thursday, October 7th update

Below is another update from Corby, Roma's teacher.


     Morning Jennifer,

     Hope you are enjoying this beautiful week!

     Getting you caught up on Roma's week, Roma
     has had very good days this week.  She has been
     busy w/ language arts, swimming, science, social
     studies, outing to the Pantry, therapies, getting
     outside during class activities, and work in the classroom.

     Roma is such a neat kid and we are enjoying every minute
     with her.  I love her smile.  I have been singing w/ her daily,
     as do all of our staff, and Roma is doing a good job with
     following her schedule and participating in activities w/ peers,
     staff, and others in the community.

     Grandma Evelyn and Grandma Judy are delightful  :)

     Here are some pics!  Enjoy the day,

     CM

     Corby D. Maddock

            

Thursday, September 30, 2010

Below is an update from Roma's teacher along with some photos of her day.  Remember, you can click on the individual photos to enlarge them!

     Morning Jennifer,

     Roma had a busy and good day yesterday.  We went to the
     Pantry and she enjoyed our brunch.  Upon return to the center
     we checked out the newspaper, did some reading group activities,
     and had a snack b-4 the afternoon.  In the afternoon Roma completed
     some Stages assessment w/ Rachel and Simone, social studies, 
     updated the calendar in our room to October, and finished up w/
     some coloring of a coloring sheet she picked out to finish the day.

     Also I have included some pics of a math activity w/ a bar graph
     and dancing during a square dancing lesson during language arts
     on Monday.

     I will write you more after school.

     Enjoy the beautiful day,

     CM

That's all for now, we hope you enjoyed reading about Roma's day!

Wednesday, September 15, 2010

Below is an update from one of Roma's teachers.  They are keeping her very busy and she seems to be transitioning well and enjoying herself!


     Good morning Jennifer:

     Roma had a very good day yesterday.  She was positive, happy, enjoyed
     the activities, and transitioned from place to place throughout the
     building.

     She mailed a letter home to you and it should be coming to you in the
     coming days.  We have attached a picture of her working on the computer
     on her letter.  We had a lyceum in the gym in the afternoon and Roma was
     engaged in the activities.  The lyceum was about uniqueness and people
     w/ disabilities / enpowerment.  

     Today, we are going to the Pantry for brunch, have social studies,
     therapies, individual work, and missions.  Check in w/ you later today.
     Continue to be proud of Roma, she is having a very good transition.  Also,
     she loves playing the keyboard in our classroom during preferred time
     after lunch.  Glad to hear Roma had visitors stop by the Cottage and
     enjoy time w/ her.

     Enjoy the day,

     CM

Bye for now.  More to come soon!