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

Let's Get Something Straight

A friend said a funny thing to me the other day: She suggested that all of these "trials" might be in result of William and me, possibly a prayer to be closer to God or a heart-felt desire to understand better the mercies of the Lord. Maybe you've heard or even have said yourself, "Don't pray for patience as it is sure to be tested!" And maybe in an attempt to better explain God, you might have said, "the Lord never gives anyone more than she can handle," while thinking secretly in your mind that this might protect you from having extreme problems (such as your own children with special needs) because, "I'm not strong!" Humph...

So here I go in another attempt to be transparent on my blog. Please allow me to express myself on this issue.

First of all, the Lord is not testing me and William through our children's disabilities and medical issues. The problems that we find difficult in our life are actually the same that most people find difficult in their everyday lives: finances, marriage, and other self-centered attitudes like stubbornness,unforgiveness or jealousy. Those areas of my life are definitely where the Lord challenges me with His rules, His allowance of temptations, and the reminder of His Word for ways to deal with His "testings." Meaning that He takes my desires to be closer to Him and He shines a spotlight onto the things that distract me from entering into His Perfect and Holy Presence. Doing this answers my request to be closer to God because His Holiness requires me to leave behind all the things that disgust Him, like my personal problem of anger, thus keeping me out of His Presence.

Let me reiterate: The Lord is NOT using my children's disabilities and medical problems to test or tempt me and William. In fact, my experience dealing with the unusual and extreme special needs of a child for the last ten years, plus adding a second set of unrelated and equally upsetting special needs of another child for the last four years, has shown a pattern of love and provision not a pattern of love and correction. In actuality, the last ten years The Lord has loved and "held" our family through all these major medical difficulties two of my children face in this world; a world in which we must live where bad things have happened ever since Adam and Eve ate that apple and were sent out of the Garden of Eden.

Allow me to add firmly: William and I are not amazingly strong, and the Lord knew full well that we would be brought to our knees from the time we became parents of our firstborn (healthy) son! Relying on our own strength has never been adequate or reliable, even when we had one child. And instead of it being about our strength and ability, it quickly became about the Lord's provision of His own strength and ability! While dealing with this intense grief over, overwhelming fatigue from, and immeasurable responsibility of caring for two children with medical disabilities, the Lord has provided His grace to get me and William out of the bed each morning even though the nights are usually just extensions of meeting the daily special needs of these children. Oh! And let's not forget the "normalcy" our family must establish for our three healthy children. In spite of always sacrificing normalcy as required by living in a family with special needs, these three children are well adjusted and quite wonderful which is also by the grace of God!

So let's get something straight: William and I did not "cause" our children to have disabilities because we pray. God the Father did not find us particularly strong so he gave our children special needs. Instead of remaining uninterested and unreachable in heaven, the Lord reaches out to us and has His Hands all over our family even though we feel overwhelmed and depressed about these medical concerns.

And here's a hint: When you see our family or those like ours, it's okay to be dumb-founded and clueless. Don't try to "fix" things. If you can pray with real dependability then offer. If you cannot remember to pray then don't offer. Otherwise, just say "hi" and smile. It's okay, really. Remember, we have a Saviour already; there's nothing else in this world that will make us happy.

Thanks for letting me get something straight. I'll update with all of our news later. For now, we're letting things settle down, M&R7

Frustration, Devastation, and Hope

First on Tuesday, we visited with the cardiologist at Dallas Children's Hospital. After an entire morning of EKG, X-ray, and re-telling of medical history to nurses, medical students, medical fellow and again to the actual cardiologist, we still know nothing about what is causing Aly's tachycardia. We know she has tachycardia; we don't know why. We know her heart looks good; we don't know why it races. We know her heart has a normal sinus rhythm; it just pumps too fast after sitting up for a couple hours. Hmmm. The doctor feels that this is a neurological problem. He feels this might just be a Rett thing. Frustrating!

Hmmm. This "Rett thing" is messing again with Aly's quality of life! Maybe, it's related to the high TSH (thyroid) and can be treated by the endocrinologist? We'll see the endocrinologist at the end of the month. In October we have an appointment with the Rett Specialist in Houston, but Aly cannot tolerate a trip that requires her to sit up for long periods of time which causes her to suffer from the tachycardia! Frustrating! We're hoping that our neurologist in Dallas has something he might prescribe to Aly for the trip to see the Rett Specialist. We'll see the neurologist in Dallas next week for Aly's and Cam's appointments.

Then on Wednesday afternoon, the doctor and I briefly spoke on the cell phone about some disappointing results from Cam's tests. The sleep study reveals that Cam has periodic limb movement sleep disorder. The MRI shows nonspecific scattered signals in the front of Cam's brain. However, Cam does not have a brain tumor (I didn't know we were looking for one) and I am not sure about whether there was any brain damage. I was writing down the information while cooking dinner, doing laundry and taking care of my kiddos, so I missed some information. Like I said, we'll see this doctor next week for more details. And even though I reminded him of the pending appointments, he most importantly called because he wanted Cam started immediately on anti-seizure medication since the EEG reveals significant abnormal activity on the back left side of the brain, which indicates that Cam has seizures while sleeping. I should say he insisted we begin medication since Cam has a (newly diagnosed) seizure disorder. Needless to say, we are devastated, again.

Hmmm. We feel so frustrated and so disappointed!

Recently, I turned to my "bloggy" friend who inspires me to have hope through her perseverance and gifts! Click on friend and read how she offers hope to me, and to all of us. She might look like she has no quality of life, but looks are so deceiving. Just give her a chance and read why she is inspirational!

Hmmm. To all of you out in the "normal" world, we may look like we are hitting a "record setting" low since the circumstances surrounding our family seem unbelievable and unbearable. And actually, we currently feel like things are desperate as two of our children are having extreme medical problems that are completely unrelated to each other. BUT, looks and feelings are deceiving! I know this because many times in the past we've thought our family has hit "rock bottom," only later to realize that the "valley" could run much, much deeper! You're right: William and I feel absolutely devastated!

But the truth remains:

I will lift up my eyes to the mountains; from whence shall my help come?
My help comes from the Lord, who made heaven and earth. (PS. 121)

Just know, we're keeping our eyes on the mountain, on His truth, even though we feel like lying down in this valley for now.

By the way, on Monday afternoon, we took these pictures of Aly. See how proud Aly is of her new, purple, butterfly(wrist band)bracelet? Kassidy blessed her sister with this gift by earning tickets for good behavior at school, by saving ten tickets, and then by spending them at ticket store on Monday morning. All weekend Kassidy was excited to give Aly such a wonderful gift. Now Aly matches Kassidy's pink, butterfly (wrist band) bracelet, and both of our girls are so proud! Unless you know Aly, you might not feel like she has much of an influence until you see the truth of how important her life is to her family and her siblings. The truth of hope manifested in the generosity of her sister!

I guess you can tell we definitely need prayers now. I'll post again later, M&R7

The LAST two days...Plus a little more...

Howdy! Alright, we made it through a tough couple of days. On Thursday, Aly had an appointment with the hip specialist, and her hip looks great! The orthopedist was more concerned with the slight curvature of her spine, wanting to re-check it in six months. Scoliosis can happen when a girl has Rett Syndrome, especially since our Aly cannot sit without major support and cannot stand at all anymore. She had a tough time sitting in her wheelchair for such a long time. We left at 7:45am and finally got home just before noon. Poor Aly struggled with tachycardia, and we finally see the cardiologist this Tuesday!

On Friday morning, Cam had his sleep-deprived EEG. Preparation for that test began Thursday night since Cam was allowed only four hours of sleep. After getting the rest of the kiddos to bed, William played board games and on the computer with Cam until midnight when Cam looked up at Daddy and said, "Too tired; all done," and proceeded to get into my bed, falling right to sleep. The alarm awakened us at 4am and we began our day watching Cam's favorite shows, eating, showering, and playing until the rest of R7 needed to get ready for school. William kept Cam awake on the ride (in the rain) to Medical City Dallas. We checked in, and our boy was a super star at tolerating all the probes "glued" on his head and chest. He barely stayed awake long enough to answer the tech's questions and fell right to sleep. TEN MINUTES later the child had to be awakened! He was such a trooper!

Thanks for all of your prayers. We hope to get results soon from all of Cam's tests. This upcoming week we visit with the cardiologist, my mom and dad leave for a ten day trip, and we return to our usual schedule of homeschooling and therapies. Also, we're starting the process to begin speech therapy with our local school district which means additional meetings(ARD's) and might mean additional testing. UGH!

Okay! So that was the LAST two days...plus here is a little more...

For those of you who really know our family, you know how we dream of serving in Kenya some day when, if ever, the Lord drastically changes our circumstances. Until that amazing day happens, we follow our friends who already answer the call as missionaries in Kenya. We live vicariously through Steve and Nancy Peifer as we wait for updates on their website (click on website) where recently Steve explained that there is no more money to buy food to serve the children in their school lunch program. I thought I might give some of you a "heads up" on their website, and if you feel led please consider giving some change to make a change for students in Kenya.

Okay! Thanks for allowing me to share the last two days...plus a little more with you. As usual, we'll update when we have a couple of answers. I seem to enjoy updating of FB so don't forget to check on us there. I hope your week will be grand! M&R7