Reality and Wishes

Actually, I update often on Facebook, but it takes so much more effort to post on this blog. I constantly think of things to share, but usually I end up distracted by the demands of reality. I would much rather take time to write than to wash laundry or to cook meal after meal after meal after meal. I wish I had more time! Hmmm...Did I say, "Wish?"

Those of you who know our family know how we wish everyday for a Disney Trip to celebrate Aly's birthday each year! Wishes are magical in our house, but they're not to be wasted either. Why do I think that? Well in Disney's Aladdin, the genie will grant only three wishes to his master. Humph! My kids think wishes grow on trees! Okay! Yes, usually parents say money doesn't grow on trees, but I find myself correcting my children when they wish for frivolous things and "waste" one of our limited number of wishes. Ha! You know like when Kas wishes her brothers would let her play Lego's with them or when Mason wishes his teachers would not assign homework over the weekend. Ethan was determined to get a baseball mitt and he constantly wished that we would take him to Academy to buy him one.

I panic to think my children are wasting our wishes! Everyone hears me lecture, "If I had a wish, I would wish for something bigger, like a new van that fits Aly's wheelchair, for a wheelchair accessible bathroom, for everyone to attend CCA, and especially for a trip to Disney World to celebrate Aly's next birthday! My wishes are for healthy children who aren't vomiting or running fevers so we can go to church on Sunday. I wish for Daddy to have a good day at work where he will remain protected from job cuts and where at the end of the day he will feel accomplishment in spite of the overwhelming responsibilities.

Really, our family has been granted many more than three wishes! Some of the wishes have been small and some have been huge, but all have come directly from above! Recently on a quick run to Walmart, Daddy bought two baseball mitts, one for Ethan and one for a second player, whether Daddy or Mason. Some of you remember last Thanksgiving when our family found a great deal and bought Aly's new magic carpet (a hi-top extended conversion van) in which she rides with smiles and giggles, comfortable and safe in her wheelchair. Most importantly, Daddy has a job, which is a huge and unpredictable blessing in this local economy where municipalities are cutting budgets resulting in layoffs and pay cuts.

A huge ongoing wish of ours is sending our "healthy" kids to Covenant where Mason started his ninth year, Ethan started his fifth and Kas started her second; what a legacy made possible through the generosity of CCA scholarships and the provision of the Lord to bridge the gap between CCA's help and the rest of tuition! Almost three years ago, Make A Wish Foundation granted Aly a Wish Trip to Disney World and Give Kids the World Village for R7. The magic from that first trip inspired our desire to celebrate Aly's birthday each year at the place that makes her smile and giggle most! With this as motivation, Aly "fights" through illnesses more successfully resulting in Disney's "Wish" fireworks celebrating two additional birthdays and lighting up Aly's face and her big, beautiful smile.

But like I said: Our wishes have not been granted by a genie in a bottle! And certainly we have received far more than just three wishes! Also, it is important to realize that all good things come from God, but more challenging is recognizing that the Lord does not give us everything that we want. Hmm... We all understand not getting every frivolous thing like when my children sometimes wish for extra dessert, later bedtimes, no shower or bath tonight, and no vegetables with meals. Of course, it's hard not to get everything for which we wish, especially when the prayers focus on a cure for a child. It's hard to understand sometimes. Like when a family spends time on their knees praying, and the Lord makes them wait. Why doesn't the Lord grant our "wishes" right when we ask for them?

This to me becomes compelling evidence that God is who He says He is in the Bible. Why? How? Truthfully, it's mind-boggling but very simple. If God were made up in my mind, I would have wished for a genie who called me 'Master' and who granted my wishes when I wished for them. Instead, God is the creator and master. And yet in spite of being God, He allows me to call him Father and He calls me His child. He promises to takes care of me. He reminds me that I am not all-knowing. And even though I cannot have all my wishes, He is giving me good things because He gives only good things.

9."Which of you, if his son asks for bread, will give him a stone?
10.Or if he asks for a fish, will give him a snake?
11.If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him!
Matt 7: 9-11

Anyway, I wish you a wonderful Thanksgiving. Of course, I will post soon. M&R7

The Rett Monster vs. Aly Angel

Oh Boy! It's been a rough week for our Aly, suffering with unstable oxygen saturation levels,tachycardia, and now adding a persistent congested cough. At one point when we had Aly at the doctor and Nana picked up the children from school with Cam, the kids questioned if Aly was once again in the hospital! And as hard it is to see our precious girl suffer, we have been so blessed to keep her home with us through this tough week. Knowing that Aly could return to the hospital if things get worse, makes keeping her home seem like such a gift to be together.

What about this Rett Monster? Since October is Rett Awareness Month and it's almost Halloween, I must take this opportunity to share with everyone a little more about Rett Syndrome, the name given to the monster that plagues our girl and our family. I hope you've read this and this to become more familiar with the Rett Monster (click on this and this to learn more) but there's more I need to share:

1. There are four stages of Rett - Aly is in the fourth and final stage.
2. Rett can be caused by these three gene mutations, MECP2, CDKL5, and FOXG1 - Aly tests negative for MECP2 and has not had further testing.
3. The severity of Rett differs in girls and recently more boys are getting diagnosed with a form of these mutations - Aly has the most severe form.
4. Rett is NOT hereditary, except when it runs in families - Confusing, I know.
5. Rett is the MOST severe form of autism, although it may not be classified under the Autism Spectrum Disorder umbrella forever.
6. Rett WILL be the first REVERSIBLE neurological disorder - clinical testing has successfully reversed Rett symptoms in mice with the MECP2 mutation.
7. Rett actually does not kill; it maims - Aly suffers from the "process" of her body's deterioration making her lose skills and bodily functions; her brain remains unmarked but with atrophy.
8. Pneumonia kills some girls with Rett - That's why it is so serious when Aly is sick.
9. Rett does not mean retarded - Preferring to call it intellectual disability, many people are classified mentally retarded because they are non verbal and unable to speak. Check this out to amaze yourself about what might be going on in Aly's mind. (Click on this.)
10. Rett is a monster - Aly is an angel!

Tonight, Aly has started running a low-grade fever. We will see what this night might bring our girl, but the morning will arrive for all of us. We will defeat the Rett Monster some day soon; we pray selfishly that it will happen on earth before our Aly gets her official angel wings. If you're led, please consider a donation to help find a cure. (Click on donation and cure for information.) Thanks for praying for us. M&R7

She's With Me

This such a sweet glimpse of the love we have for our Rett Angel, Aly. Collin Raye was inspired by his angel, too. Please enjoy and think of October as Rett Month when we share with the world our desperate hope to find a cure! Consider a donation today (click on donation for information)that will help make a difference for the future of Rett Angels all over the world.

Collin Raye's She's With Me (click on blue): http://vids.myspace.com/index.cfm?fuseaction=vids.individual&VideoID=100182023


I will post soon with an update about our family. Thanks for your prayers; please keep them coming. M&R7

Just a year ago...

Last year I started this blog. My hope was to inform family and friends of our prayer needs and to show a glimpse of how life is for us. My first post was about Rett Syndrome and how it affects our Aly's daily life.

Since October is Rett Awareness Month, I wanted to share again with you about Rett. Rett Syndrome is estimated to affect 1 girl in 10,000 female births. That possibly means that every five hours a new little girl is born with Rett, although her family will not know something is wrong at first. Also, Rett Syndrome currently is classified under the Autism Spectrum Disorders (ASD) and for now is the only one with a known genetic mutation. So much is on the horizon of finding a cure to Rett Syndrome!

I hope to update soon about how Aly is doing and how Cam is adjusting to his new medicines. For now please read my original post about Rett and Aly. Also, please keep us in your prayers we still need them. M&R7

Hi All!

I hope everyone is doing well as half of October has passed already. October has been designated as Rett Syndrome Awareness Month, and I felt compelled to share with you what Our Aly faces on a daily basis. Days are difficult for our sweet Aly who is in Stage IV of this very debilitating syndrome which has taken away her voice and her mobility leaving her with a compromised immunity and in fragile health. However, her smiles are treasures to all of us in her family, and we seek to please her until she gives us a sweet giggle and smile. Aly finds pleasure in the most simple things like when her siblings sit next to her, like reading Angelina books, like watching Disney princess videos, and like taking a short drive or walk around the neighborhood. When our girl is well, she sleeps throughout the morning but awakens to spend time with our family when the rest of the children return home from school. Aly also works very hard with her home-bound teacher for two hours twice a week. Everyday, Aly takes many medicines to help with seizures, reflux, and her breathing. She also receives all of her nutrition through a feeding tube. On her hardest days, Aly might not smile at us at all, but her eyes still show incredible trust and love.

This is just a glimpse of Aly's life. It's my hope that each of you might be touched in a positive way by our Aly's sweet angel-spirit as we have been in her family. It's also our hope to find a cure for Rett Syndrome and reverse the devastating symptoms that plague Aly each day. This cure is not a lofty dream, either. Research is moving towards a cure and the goal is to realize it in five years. Please click on the links that explain everything in detail. When there is a cure for Rett Syndrome, many other diseases such as autism and Parkinson's will find remedy as well. And if you're able, please donate towards research.

http://www.rsrt.org/donors/face-to-face-with-Rett-Syndrome.html

http://www.rettsyndrome.org/index.php?option=com_content&task=view&id=14&Itemid=375

Thanks for letting me share about our Aly. The months ahead present challenges for our girl as the weather turns colder and illnesses like flu, pneumonia, and colds begin to affect the health of everyone. Please keep her and our family in your prayers during the next three months. We whole-heartily believe that if we can keep Aly healthy and alive that she will experience healing with the cure of Rett Syndrome.

It's in the heart of God and in the hands of man,
Mindy & the Rumuly 7
William, Mason-13,Aly-10,Ethan-8,Kassidy-6,and Camden-6

Home, Sweet Home

Yes, Aly is home, sweet home! Thanks for all of your prayers. Aly has many medications and breathing treatments. Our new medical routine at home has an extensive schedule, but we're home. Please continue to pray for Aly's health and for our stamina. This hospital stay was short, and we hope to keep Aly home without complications causing her to return to the hospital any time soon. We'll update later. For now, we're just happy to be home, sweet home, M&R7

Update

Thanks for your prayers. Aly is stable in isolation at CookChildren's Hospital. She has the flu and pneumonia. Mason came home late this morning with fever. Will and I are trading off 24 hour shifts between the hospital and home. Obviously we had to cancel our trip to the Rett Center in Houston, which I was told has been affected by the flu themselves. Thanks for checking on us. Thanks to Mom and Dad for helping with everything. We'll update as we have news. Please keep praying for our stamina and especially for our family's health. M&R7

Hard-Knocks Life

So now that I have set something straight, let me set something else straight: We desperately need and are deeply thankful for every one's support and sweet encouragement to get through our "rougher than usual" rough times in this hard-knocks life! It is through your messages, thoughts, and prayers that we feel less forgotten, abandoned, and isolated. For us, not having a normal life means not having social opportunities, and it means not traveling to visit family, and it means not having the freedom to do certain family activities. It means our money and time goes to therapy, doctors, and testing. It means balancing life around an intense focus on our children's disabilities in order to help them get better and keep them safe with an equal balance to appreciate the enrichment and enhancement that these two special children bring to our family and others. Really, it's an impossible task to balance the two extremes, but it's completely necessary in order to survive the difficulty of this extreme life!

So please send us your well-wishes, thoughts, and prayers as William and I struggle to provide a balance since the "hard-knocks" continue to off-set the equilibrium lately as two of our children continue to face new and multiple medical problems. For an easier way to update, I just will list some of the current issues our family is facing:

1. Aly has increased seizure activity resulting in daily grand mals.
2. Aly still has tachycardia and the new medicine has seemed to worsen the racing of her heart.
3. Aly is losing clumps of hair. We think it's due to the thyroid condition. We finally see the endocrinologist on Monday.
4. Aly has lost some weight which might be related to the recent change in her formula. A change caused by the company's recent decision just to stop manufacturing the milk since it was no longer profitable after more than a decade.
5. We plan to travel for one night to Houston with Aly and Cam for the Rett consultation. We still have to work out travel plans and figure out expenses. Mom and Dad will keep the 3 healthy CCA Rumulys.
6. Cam is transitioning onto the seizure med which has meant some increased activity during the night and grumpiness during the day. He has been diagnosed with seizure disorder or epilepsy.
7. Cam also has Periodic Limb Movement Sleep Disorder which results in his body awakening him multiple times during the night. His seizure med might help this condition and Melatonin is also an option.
8. Cam has an ARD with the ISD on Tuesday to begin speech services recently offered by the district through Proportionate Share Funding. We're considering a possible placement in a blended kindergarten although the district might continue to offer only a self contained classroom instead.

It's really hard for me to keep everything straight about our needs. I am sure that I left off something. Usually, we work through the most pressing issue until another one needs more attention, but lately multiple issues are demanding our consideration, thoughts, and decisions. Of course, flu and cold season is here, and our Aly needs safety from exposure as we attend multiple medical appointments in hospitals which are filled with numerous cases of flu. Obviously, we still desperately need every one's prayers! And we treasure encouragement because we're feeling overwhelmed by the "knocks" of this hard-knocks life, M&R7