This morning Kyara had an esophagram done to make sure the opening from her esophagus to her stomach was wide open. The test confirmed that it was open, so we should not have any problems going back to Atlanta. I asked for copies of all of her films on a CD to take with me, and the receptionist asked, "All of them? That will be alot of work." There are 149 xrays, studies, ct scans, etc. "Yes, I want them ALL." I want to have something to show the doctors in Atlanta where she was and where she is now. I want them to see the pneumatosis, so they know what happened to her. I want the copies so that I have them, too. Alot has happened to Kyara and I want to keep a record of it all.
Today Kyara opened her hands by herself. This goes against her muscle tone, which causes her to clench her hands. She opened and closed her hands for 15-20 minutes before stopping. I was excited because the occupational therapist, Donna saw it too and was impressed. This morning Kyara also appeared to answer two questions with blinks. The first time, I had her sitting "criss-cross" on the bed (of course, I was supporting her, she was not sitting unassisted) and when Dr. Rita (PM&R doctor) came in, I laid her back on the bed on the pillow. She got very fussy. Dr. Rita told her to blink twice for "yes" and close her eyes and keep them closed for "no." Then she asked Kyara, "Do you want to sit back up? Remember blink twice for yes and close eyes for no." Kyara blinked twice. So I sat her back up and she immediately stopped fussing. To be honest, I am not sure what happened the other time, I was on the other side of the room (there were 3 docs in the room with her) but Dr. Rita said she responded similarily. Later in the afternoon I tried it again, but didn't get a response. Oh, well. Dr. Rita said we have to work on it with her, so I have a new project!
Kyara has these moments where she is doing amazing things, I just wish they would become more frequent. It is frustrating to see her do something, and then not do it anymore. Where did it go? Consistency...I pray for good things to happen on a consistent basis.
Kyara Dzenis
7 comments:
Kyara keep up the good work! We are so excited that she had a positive esophogram test and that hopefully she will be able to come home... We will pray for your homecoming, soon.
Love to all,
Josette and Laurie
I am so happy to hear the positive news from today! I know healing will continue and I can not wait to see you back here in Atlanta!
Sherry
WOO HOO! We are so excited for the good news today! The consistency will come, it was something new, so it might take a little time to get it right. Way to go telling them you want ALL the xrays, did they think you only wanted SOME? Wow, the ignorance of some never ceases to amazing me. We are all praying for a quick homecoming - we are all waiting with open arms!
Love to all,
Ms. Michelle
Genie,
Once again YIPEEEEEEEEEEEEEE! She is more aware than you think!!! Our HOPE word today is OPEN. Open-shut-open--such a wonderful way to let you know that she KNOWS you are there!! OPEN for your OPEN-ness that you are willing to share with all of us who love ya'll. OPEN for all of our hearts to express our support and love to all of you. Hug Peggy. I love you, Wink
Genie-INSIST on having all the films. You will need them for future decisons and to keep her care consistent. Don't let them fuss about having to get them ALL. You are absolutely correct and don't leave without them!!!! Even if it delays your homecoming a couple days, wait until you have all the documentation-it will be well worth your time and save so much trouble later. Wise thinking Genie-you are Kyara's best advocate and this is the best way to ensure proper care in the future.
Susan Kennedy
All I can say is WOW, it is so good to hear the progress lately! Isn't it great to get to have a front row seat to God's amazing healing? I'm glad you are such a great advocate for Kyara making sure that you get copies of ALL of her records and x-rays. Keep up the good work Kyara, we're still praying daily! My kids were given "rocks from the garden of Gethsemane" at Sunday school and were to write on them something to pray for...all 3 wrote Kyara's name. You are all in our constant prayers! Can't wait till you get back to Atlanta!
The Lopers
Oh what awesome news. Work them hands Kyara and eyes. Keep opening them and shutting them..
Way to go mom on demanding copies of everything. Do not leave without them. Do not take their word that they will fax them etc. GET A COPY! You are doing what you know is right for that sweet little girl. We are ready for you all to be back in Georgia!
The Cambas Family
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