Forecast: Impending Hurricane

Hopefully, the weather has helped with your families' summer plans. It seems that the weather service is encouraging us to board up the windows and evacuate to higher ground! Whatever could that mean? Why would the Rumuly 7 need to worry about a possible hurricane and at what level is the weather service predicting it might be once it hits land? -A level two, three, or (God forbid) a four or five?

Here's an update:

1. Finally on Monday, we get a consultation from a second neurosurgeon concerning the difference in opinion between the original neurosurgeon and radiologist regarding the most recent MRI results of Cam's spinal cord and how to treat a possible second tether (click on tether)of the lumbar region and a small syrnix (click on syrnix)found in the thoracic area.

2. Tested three times, Aly's blood work shows elevated TSH levels, Thyroid, (click on thyroid) which might be resulting in her sleeping 22 hours a day, dry skin, hair falling out, and tachycardia.

3. Revealed on a recent EKG, tachycardia (click on tachycardia) is causing our Aly's heart to race at very high rates and for lengths of time that definitely affect the enjoyment of her daily life and possibly might be threatening her very life. On Monday, she will receive a Holter Monitor (click on Holter Monitor) for 48 hours for more definitive charting of heart rates and rhythms.

It's hard for the weather forecasters to predict at what level the hurricane will hit on Monday or if it will land on The Rumuly 7 at that expected time. We rely on your prayers to get through it if it does hit, no matter the level. We'll update on any damage done after the predicted land fall. Don't worry: The National Guard is on "high alert!"

And they came to Him, saying, 'Save us, Lord; we are perishing!' And He said to them 'Why are you timid, you men of little faith?' Then He arose, and rebuked the winds and the sea; and it became perfectly calm. And the men marveled, saying 'What kind of man is this that even the winds and the sea obey him?'"(Matt 8: 23-27)

Thanks for checking on us; we'll let you know! M&R7

Happy Father's Day!!!

Some Pictures of the Rumuly 7 (plus BOOMER)

The Dog Days of Summer

Happy Memorial Weekend! It's been a BIG one for us. School finished on Friday for Kas, Ethan, and Mason. All three had a wonderful school year and will attend CCA (praise the Lord for financial aid) next year starting in early August. And although we have several doctor's appointments in four different local hospitals for three different Rumuly's in the next month and even though we will continue to attend Cam's therapies (PT,OT&ST) twice a week all summer, we have happily entered the DOG DAYS of Summer!!

Now take a deep breath. Is that smell familiar? Open your ears. Did you hear a deep, low-sounding whimper? Close your eyes and hold out your hand. Is that a familiar feel when your fingers touched that? What was that wet stuff that dripped on you, or whose was that big, wet tongue that just licked your face?

Trust me, the five senses are stimulated, and our Ethan's dream has come true! A wonderful two year old Basset has been rescued and united with his very own boy! -And boy, and boy, and girl, and girl, and Mom and Dad! Oh! -And 16 year old, indoor, orange tabby-girl cat, Miss Dobson!


It's been six years in the works and yesterday it became a reality in the best sense of the word! Meet the dog we have adopted, "Announcing Boomer;" thank you, Brandee! (Click on Boomer for info about the North Texas Basset Hound Rescue.) It seems as if this dog has been a part of our family forever! He has the best manners, is fully house trained, loves the children and their constant attention, sleeps all night in his crate beside Mason's bed (where Ethan had to sleep, also) and already has filled in each of our hearts, especially Ethan's, that which only a loyal, good-spirited, trust-worthy, best friend could! -Not to mention, the happy licks he bestows on any willing face!

It seems that we have just entered the dog days of summer! OH! And have a "dog-gone" happy holiday. M&R7

Announcing Boomer!!!

Not-so-Silent Angel on Mother's Day

Mother's Day is a special day for all mothers. It is for me too. Although, it is bitter-sweet for me as the demands of meeting the special needs of two of my children cannot take a break even for one day. Really, the "little things" on this day make me feel most special:

Here's a song from the perspective of a parent at the beginning of a daughter's journey through Rett Syndrome. (Click on Rett Syndrome.)



Also, here's a poem written by a dad whose daughter has Rett:

Rett Mom. Special Mom.

A title that not a single girl ever dreams of being. Never have I heard a group of young girls on the playground utter, “I’ll be the mother of a disabled child.” No they all want to be ballerinas, or veterinarians, or doctors or mothers of perfect families. They never dream of the “job” you have. I hear so often that “God gave us these girls and we are so privileged.” Although I am sure that every mom loves these children more than you ever dreamed possible, I know you miss what might have been. We fathers see you and know that the loss you carry is masked by the amazing things you do for our children. We see you plan and organize IEP’s and doctor visits and school meetings as if you were born for this task. Your efforts are not lost on us even though we are not always good at saying it. We know that under that TOUGH I HAVE IT ALL TOGETHER veneer there is as much fear and panic as we men refuse to show. On your special day I
want to say to all that have kept me sane in my many trials with this insidious disorder…Thank you.

Rett Mom-Special Mom,

You are simply the best.

Happy Mothers Day!!

Britt

Father to the three amigas
Megan 15 years young acting 25
Brianna 9 years old my wise one beyond her years
Erika 6 years of beauty and love RS R270X

Husband to Sharon


This is a sweet poem that a teacher wrote for her student with Rett Syndrome:

Sydney, Sydney, Sydney
>
>
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> Sydney is the most wonderful cousin you could ever have, and only three of those wonderful things are; her smile, how beautiful she is, and how nice she is to me.
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>
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> The first reason I love Sydney so much is her smile. Sydney's smile is as long as a tape measure. Also it is very elegant too and it makes me laugh sometimes. But the reason I like her smile the most is it shows me that she is happy, and happy is a good sign.
>
>
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> The second reason I think Sydney is so wonderful is how beautiful she is. Sydney is as beautiful as a rose. I think personally that if everybody in the world was Sydney, make- up would not exist because Sydney is too beautiful for make-up
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>
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> The last, but not least reason Sydney is wonderful to me is how nice she is too me. Sydney is the best cousin I have ever had and I have two more cousins, but they are boys. Sydney is always nice to me especially when I come to visit her. Sydney always shares her toys with me, even her Wii.
>
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> Sydney is a kind hearted, sharing, respectful, trustworthy girl and that's why I think she is nice.
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> Actually, I forgot to tell you that Sydney is also an angel. She has something called Rett Syndrome, and does not talk out loud. But I understand her and she likes to look into my eyes. Sometimes she tells me that she wants me get her treats or her beads with her eyes and that makes me feel really special.
>
>
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> Now since you know why Sydney is the most wonderful cousin you could ever have, you know that I love her for a lot of reasons, but three are her sweet smile, how beautiful she is and how nice she is to me. I love you Sydney.
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>
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> Love,
>
> Madison


These are just a few of the sweet "little things" from my silent Angel among the many ways the rest of the children have blessed me as a Mom today. I hope that Mom's Day has been special for you. Thanks for checking on us, M&R7

Land AHOY!!!!

Anyone who's been "out to sea" for a number of days might agree; the first sight of land is one with disbelief, followed with a big sigh of relief. And even as we began to think all might be lost, "Land AHOY!" Thus, allowing our ship to dock at the closest port until the next call to sea...Sweet,sandy beach and wonderful coconut trees, we will enjoy them for as long as we can!

Answers to Prayers:

1. Cam's feet, although partially clubbed, work super well and require no further investigation for now and no need for Scottish Rite.

2. Cam's spinal cord requires no surgery, for now, as the second tether on the lumbar in the area of the original tether is not attached to the cord. Also the syrinx in the thoracic area is minimal and will be monitored for now.

3. Aly will continue to stay at home until the swine flu epidemic subsides; so far allergies are our worst problems.

4. Ethan will visit with Dr.Owen, our neurologist, this summer and is finishing up a great year in second grade, despite a prevalent tic disorder.

5. Our appointment is set at the Rett Center in Houston at the beginning of October, thankfully before the next season of flu and colds begins.

Thanks to all those "Light Houses" out there focusing prayers in our direction and helping us to find the shore safely. Having dodged all those jagged and dangerous rocks, we are exhausted and so relieved.

"Because he loves me," says the Lord, "I will answer him;
I will rescue him;
I will protect him, for he acknowledges my name.
He will call upon me, and I will answer him;
I will be with him in trouble,
I will deliver him and honor him.
With long life will I satisfy him
and show him my salvation...
Psalm 91:14-16


Almost a drowned rat and very thankful for THE mighty "Coast Guard," M&R7