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.
Thursday, February 24, 2011
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 :).
Sunday, January 16, 2011
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
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
Saturday, November 6, 2010
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. :)
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