I know it's been too long since I last posted. As most of you are vacationing and playing, we keep busy every day during the summer, too! But I thought I would steal away from the chaos of summer break and share a moment of my morning with you. Earlier on Boomer's walk after Cam's therapy, Kassidy again talked about how great it would be if Aly could walk, talk, and use her hands. Many times she has dreamed about her sister being healed: A time when Aly runs into our room and jumps on our bed, awakening us and hugging us while giggling and singing. Kassidy accepts Aly and treasures her sister as all of our family does, but during sleep her mind shows her a different "place" where her sister is healthy. And although the love I have for Aly would not increase or change, I dream of a cure for Rett, too.
Can you please take a moment each day to vote for our worthy cause? It's free and it really only takes a minute. And we need a cure! The Pepsi Refresh Project grants money to the top two projects with the highest number of votes. With the awarding of money, research continues. Research that already has reversed symptoms in mice who have the MECP2 mutation. REVERSAL even in severally affected mice! I include partners of IRSF who pledge to vote for our cause in return for our votes for theirs. Once a day, everyday, please click on the link and vote for each one listed: http://www.refresheverything.com/search/?q=rett+sophias+diannah+skip.program.children+criger+scapini&ic=0&im=0 .
Thanks and have a happy summer, MR7
Friday, July 16, 2010
Need a Cure!
Posted by I'm just the MOM! at 12:57 PM
Thursday, March 18, 2010
March in Some Family Time
Let's see...We've had a wonderful March, filled with a lot of family events: The beginning of March we "vacationed" at The Great Wolf Lodge for a night to celebrate an early seventh birthday for the twins. The very next weekend R7 took our Butterfly Princess to visit the butterflies at the Fort Worth Botanic Gardens and experienced a true God Moment. The third weekend ALL the Rumulys returned to Northwood Church for our Aly's Spring Debut which was followed by a lunch treat at McDonald's. Also, Mommy and four little Rumulys (well, three little and one teen) visited the Grand Opening of the Museum of Living Art "MOLA" at the Fort Worth Zoo and began Spring Break with so much fun! The warm weather finally has "sprung" and brought all the allergies with it.
Currently, our "feverish" Aly has been placed back onto oxygen (nasal cannula) along with an antibiotic, breathing treatments, CPT, and suction. We're hopeful to keep her home and avoid a hospital stay since we have the medical equipment she needs here at home! We're praying our March will exit and April will begin with our Aly feeling better!
Thanks for checking on us. We really appreciate all your prayers! MR7
Posted by I'm just the MOM! at 2:44 PM
Monday, March 1, 2010
A God Moment For Our Butterfly Angel
Yesterday after some debate about the "safety" (health-wise for Aly) of going into a public venue, William and I decided to take R7 to see the butterflies at the Fort Worth Botanic Gardens, an event that happens only every two years. (Click on butterflies for information.) All of R7 LOVED it.
It was such a delight to spend the afternoon in the tropical rain forest looking at butterflies. Being together as a family on an outing was extra special! Aly was so excited to see butterflies which happen to be one of her favorite things; she was all smiles even before we left.
While looking at the top of the rain forest canopy and all around the surrounding bushes and flowers, our family spied blues and reds and yellows. Butterflies flitted everywhere. Waterfalls enticed the twins to touch and splash. Mason ventured away and inspected closely any resting specimen. Ethan froze himself into a statue with hopes of becoming a perch for any trusting , multi-colored beauty. William taped video of our children enjoying this special treat while I carefully navigated Aly's wheelchair and snapped pictures. It was wonderful.
But Aly had the best time of all! While stopping to watch the different colors flying above our heads, our family experienced a moment that truly must have been God given, as declared by the volunteer who witnessed it with us. All of the sudden a splash of yellow fell from above, and a Citrus Swallowtail butterfly landed on its back, wings open and flat on the ground beside Aly's chair. Much to our astonishment, William and I gasped while Cam and Aly looked down at the helpless butterfly who seemed to die before our eyes. Knowing the rules forbidding any touching of butterflies or plants, William and I stood puzzled about what to do or how to help: The butterfly's position on the ground left it dangerously close to being stepped on by feet or rolled over by Aly's chair.
So as Will turned to catch the volunteer's attention who already was watching, I leaned down and offered the butterfly my finger which it grabbed, much to my surprise and definitely to my most-thankful delight that it was not dead. I carefully showed the giant yellow beauty to our butterfly angel who grinned and watched intensely as her new friend opened and closed it bright yellow wings entertaining and delighting her. Aly shared a special and rare moment with the Swallowtail who danced and flirted with her. And as fast as it all began, the butterfly flew away leaving the surrounding adults in awe of what had occurred. The volunteer told William that she'd never before seen anything like it, and it had to be "God moment" in her opinion.
A definite God moment for our butterfly angel will be treasured by all of R7! Stayed tuned and check back later tonight: I hope to post the video of the actual moment! MR7
Posted by I'm just the MOM! at 10:17 AM
Thursday, February 18, 2010
We MUST Look To The Hills!
Please pray! Will's sister, Dawn, remains in ICU in Temple after being Careflighted from Round Rock yesterday. Angioplasty reveals a clot very near her brain, and it has become apparent that a clot caused the original stroke affecting Dawn's body on the right side. Praise the Lord that Dawn is breathing on her own and that she has some slight movement in her right leg. She remains unable to speak currently and must be awakened every hour. More testing will happen today to find any more clots and a possible cause. It seems unreal! Dawn is a 38 year old healthy and athletic mother of two school-aged boys. We'll continue to update.
We must look to the hills! MR7 (Click on title)
Posted by I'm just the MOM! at 11:18 AM
Wednesday, February 17, 2010
A Much Needed Reminder
After going without electricity for three days, spending a thousand dollars on a generator to keep Aly's medical equipment working, and all four Rumuly guys suffering from stomach virus, R7 is worn down and out! Also, I just received a message left by William's mom that his youngest sister, Dawn, has had a stroke and was being taken to a hospital in Round Rock. I have no other details, but dear friends please pray for Dawn, her two boys and William's parents.
Here's a much needed reminder; thanks Debbie for sharing:
“Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? No, in all these things we are more than conquerors through him who loved us.”- Romans 8:35,37
I'll update soon! Thanks for praying, MR7
Posted by I'm just the MOM! at 10:31 AM
Tuesday, February 2, 2010
Forecast: Sunshine
I just had to share our bright sunshine today. Oh boy! We missed Aly's smiles while she was sick...Goodbye cloudy skies; hello bright smiles! Notice that she's not on oxygen? Yes! Thank you to everyone for your faithful prayers for our family. Really, Aly's health is such a miracle and one in result of many prayers. Thank you, thank you! Praise the Lord for our sunshine! MR7
Posted by I'm just the MOM! at 4:10 PM