The Green House

Calling All Prayer Warriors

2010-04-30T15:58:00.000-07:00

This time I am asking for prayer for my dear friend, Julie and her son, Grayson. Grayson is a wonderful 2 year old boy who was born very prematurely and has had very serious medical issues since birth.

They are currently in the hospital for tests on his brain. He has been "forgetting" how to walk and looses control over his leg. The test are to determine what is causing the problem, apparently there are 3 scenarios:

Worse case scenario: Vascular Malformation which is spider web like vein on the brain.

2nd: Lesion on the brain

3rd: least of the 3 and rare is a fine motor disorder. (if anything is found option 3 would be the one to have).

Please lift up Julie, Grayson, her husband Jay, who is away with another son for a hockey tourenment back east, and the entire family.

Thanks!

Here We Are

2009-11-15T16:09:00.000-08:00

Well, we made it. The flight in was uneventful, which I always like to be able to say about airline flights. We made it to the hotel, as well. My only problem was when the taxi driver asked for payment...wait, do you tip a taxi driver? I movies they always say, "keep the change". Last year Chuck handled this part and I didn't think to ask him. Finally, the taxi driver said, "how much tip"? Ok, now I know that you tip taxi drivers, but how much? So, I decided on $10.00 on a 59.00 taxi bill. So, for those of you "taxi savvy" people out there, how did I do?

The hotel was nice and was the restaurant that we found open at 10:00 p.m. at night. Ironically, it was a western themed place, which I thought was funny...since we had come in from the "west"! Maybe I was just tired.

Scott lost a tooth in the hotel that night...the tooth fairy found him. Not to worry.

The next day we had anticipated a wonderful day of sight seeing and some shopping. As soon as we got the Air and Space Museum, Scott started complaining about not feeling well. Since, it was our only day totally free to sight see, we really didn't want to head back early, so we took a break and he started feeling better.

On the Metro (subway) ride back to the Children's Inn (at NIH) he was fine. Then just as we got off he said that he needed to throw up. Poor guy, at least we found a trash can! He felt awful the entire night, but woke up this morning his normal, happy hungry self! Thank God! He does answer prayer! Please be praying that Cynthia and myself don't get it!

This afternoon we got him checked into the clinical center. Last year while here we had the best nurse, her name is Anne, and we had hoped that she would be here this year. When we got into the pediatric unit, hers was the first face we saw. We were very happy and she said that when she saw Scott's name, she made sure that she was our nurse. See, He does answer prayer!

This year, Scott is sharing a room with a boy from Michigan (or was it Wisconsin) who has recently been diagnosed with McCune-Albright Syndrome. It is there first time here, I remember how it felt last year, so please be praying for Tyler and his family.

Well, I need to sign off, just wanted to give you an update and say thanks for all your prayers!

It's been a long time...

2009-10-13T22:23:00.000-07:00

It has been such a long time since my past post about Scott, I thought I would bring everything up to date!

We have had good news. Since we began daily shots at home as well as the monthly "big shots" that we get at the doctor's office we have seen a dramatic decrease in the levels of growth hormone. Last summer when he was first diagnosed with McCune-Albright Syndrome his levels were 1700, for a 7 year old boy they should be between 58 - 278 (roughly). When we got the latest lab results the numbers where down to 158! Praise God!

His growth has slowed down dramatically! Only one pair of shoes in the last several months! Which since he's a size 10 1/2 men's now, that's really a good thing! It's hard to find "cheap" shoes in men's sizes!

We are gearing up for this years visit to NIH (National Institutes of Health) in Bethesda, Maryland. We will be leaving on Friday, November 13th. This year my sister, Cynthia (see blog post from October 29, 2008 for more on my lovely sister!) will be going with Scott and I. Chuck and Ashlyn will be holding down the fort at home.

I will keep my blog updated and also my Facebook status with information while we are in Maryland. Also, I will have specific prayer requests posted here.

Thank you so much for reading and for your prayers!

Dian

Prayer for Kevin

2009-07-03T19:07:00.000-07:00

Calling you awesome prayer warriors in to action once again. I received this email from a co-worker. Please up hold Kevin, his family and Julie's family in your prayers. Thanks you so much!

Guys,

I am asking for prayer for myself and a dear
little boy... A couple years ago you all prayed for Brendan's team mate who had
a brain tumor, you bought his bracelets, the kids made him cards..... The tumor
is back and I can't even type through the tears, PLEASE pray again for Kevin, he
is on his way home from St.Jude in Memphis after the scans....Surgery is on the
horizon and the family has asked for me to be their prayer warrior in the
hospital again during the surgery....I don't have dates or times but will
be having to tell my boys again here in the next few days....We have a house
full of family here on vacation and my heart is HEAVY!

Julie

Emma's Swim for McCune-Albright Syndrome

2009-06-24T15:02:00.000-07:00

This in an article that was forwarded on to me by a friend, who's son is also affected by McCune-Albright Syndrome. Please read it and if you feel led to help Emma, there is contact information in the article. If you can't help monetarily, please uphold Emma, her brother, Kevin, and the entire family in your prayers. Thanks!

Magic Foundation: The Art of Being Human. By Marisa Darnel

And now here is my secret, a very simple secret; it is only with the heart that one can see rightly, what is essential is invisible to the eye.Antoine de Saint-Exupery

Antoine de Saint-Exupery, author of one of the most best selling books, left many beautiful quotes in his writing, but this one I use here, above, is one that touches me very much. He means that the most important thing of a human being cannot be seen, that is his soul, also his thoughts and his feelings and that the only way to see is with our heart. Magic Foundation ( www.magicfoundation.org ) was created to help children who have a very rare syndrome called Mc Cune-Albright and some other similar medical conditions. These are medical conditions that cause some alterations on the features of the patients and on their bodies, especially on their bones. Mc Cune-Albright is a condition from birth and these children grow up looking different besides having very fragile bones who break very easily. These children grow in pain and discomfort and they cannot play as the rest, they cannot be in a sport team or climb a tree or run a race.

You must be asking yourself about the reason for the name Magic to these organization. Well, we have experienced that these children affected by that syndrome have a charming personality which attract everybody in a very nice way. They are full of love and they enjoy affection more than anybody else. We think they have a certain “magic” to be the center of attention among the public and they make us feel love in a very spiritual way.

Everybody at the Magic Fund is very busy now, preparing a Convention which will take place in July and a swimming exhibition to raise money to the children and families who have not the means to attend this important convention.

Emma Buckley’s brother has Mccune-Albright and she has been helping to raise money to help those families who cannot afford traveling to the Convention for the past 4 years. The first 3 years she walked, the last year and this one she decided to swim. She is 14 years old now and the swimming event will take place on June 27th.

We know times are hard for many of us, but in times of need these MAGIC families require assistance more than ever to attend the convention. We appreciate, more than you will ever know, all of you who have helped Emma raise money for the past 4 years. If giving is difficult for you this year (and even if it is not), I ask you to share our story with your friends and family and perhaps they will be able to contribute, as well.

You can learn more about the MAGIC Foundation at www.magicfoundation.org. We can be reached at MsJeannieBuckley@aol.com or 954-294-2196 or Parent4Eva@aol.com (Rich). Please mail checks made out to The MAGIC Foundation in the enclosed stamped envelope to: Emma Buckley.

Here you can read a letter from Emma Buckley: June 2009

Dear Friends and Family,

It’s that time of year! I'm ready to swim again for the children and families of the MAGIC Foundation. For those of you who have never heard of "Emma's Swim for MAGIC", this is forth year we've raised money for MAGIC. With contributions from many of you, we have raised over $24,500.00. That's amazing!

My brother Kevin has McCune Albright Syndrome, a disease that makes his life very hard. Every year we go to Chicago for a convention that the MAGIC Foundation has for children and families like us. We have so much fun there. My parents learn stuff about Kevin's terrible disease and the kids play, swim, talk, and party. Kevin loves going because other kids there have McCune Albright Syndrome, too. The money we raise is used to help families come, who don't have the money to get there otherwise.

This year, I will be swimming on Saturday, June 27th. My goal is to raise $10,000. Last year I swam 6 miles. Please, help by making a pledge for each mile I swim, or by just making a donation. If you live nearby I would love to have you come swim with me. You could even get your own pledges. Please, the families need us!

Thanks, Emma Buckley

Note from Rich and Jeannie, parents of Kevin, the boy who has the McCune-Albright syndrome:

We'd like to take a moment to impress upon all of you just what the MAGIC Foundation has meant for Kevin. Although there are many, we would like to share two of his toughest experiences with you. First, when Kevin was six years old it was discovered that fibrous dysplasia (FD) bone (which Kevin has throughout his skeletal system) had grown completely around his left optic nerve and he had lost 80% of the vision. A very extensive neurosurgery was performed and bone pressing on the nerve was removed. Thankfully, Kevin's eyesight was restored. Then, four months later, during a routine MRI, it was discovered that his right optic nerve was completely engulfed in fibrous bone. We were told it was imperative for neurosurgery to be done again, or Kevin would surely lose sight in his right eye. We were petrified, but felt we must proceed.

Subsequently, Kevin lost the vision in his perfectly sighted right eye, from the surgery. Later, we learned at the MAGIC convention, through listening to one of the experts in the field, that progression of disease in the skull is typically very slow, and seldom results in blindness, although the risk is extremely high to lose the vision from surgery. It is recommended by the very few doctors who have studied MAS, to wait until there is significant vision loss. With Kevin's disease, the decisions for treatment are not always easy to make, but had we been informed with this knowledge back then we would have opted to wait. Perhaps Kevin would still have his vision and we would not be living with the knowledge that our decision was the wrong one. Kevin has had FD surrounding his left optic nerve now for over 10 years and can still pick a knat off the wall with his good eye. Thank you MAGIC Foundation!!!

This same FD has resulted in many orthopedic surgeries for Kevin. Twice his femur (upper leg) bone has broken in half. Once, the surgeon intended on removing bad bone from Kevin's femur and replacing it with "good" bone taken from his hip (it looked good on x-ray). We called MAGIC for advice and were put in contact with a doctor from the National Institutes of Health. We learned that if there were just a few hidden FD cells in the hip, we would be replacing diseased bone with other diseased bone. Even worse, in the process of transferring the bone (if a new scalpel was not used each time) Kevin's hip could be infected with FD, which could eventually eat it away. Subsequently, donor bone was used.

We know times are hard for many of us, but in times of need our MAGIC families require assistance more than ever to attend the convention. We appreciate, more than you will ever know, all of you who have helped Emma raise money for the past 4 years. If giving is difficult for you this year (and even if it is not), I ask you to share our story with your friends and family and perhaps they will be able to contribute, as well. Many hands make light work! If you would like a copy of this letter sent to your email, let me know. Perhaps you could send it out to your friends, family and associates, with your endorsement.

Time and time again, throughout the years we have been the attending the convention we have seen many courses of treatment changed through the knowledge parents have obtained, shared our experiences with others and affected their outcomes for the good, learned of new treatments which have greatly reduced the pain Kevin lives with every day, and gained much needed support from those who travel in our shoes. Although much is not known about McCune Albright Syndrome, the knowledge we do have is power. Thanks to all who have helped and will continue to lend a hand to our families.

May God Bless All Of You, Rich & Jeannie Buckley

A man passed a crippled child, a beggar and a beaten man. Seeing them... he cried,"Great God, how is it that a loving creator can see such things and yet do nothing about them?" God said, "I did do something. I made you." ~Author Unknown ~

Can I Just Say...

2009-06-12T08:55:00.001-07:00

…that my son ROCKS! I have been so impressed by him and his maturity and strength. He has been handling all the shots with so much grace. It amazes me how he can watch the shots (even though we say not to) and does not even flinch! I do have to admit that my feelings are a bit hurt because Scott wants Chuck to give him the shots… but, I guess I really don’t mind if it’s easier for him. It’s just that mom’s supposed to be the caregiver, right?

The last “big shot” that he got was the worst by far. The HUGE needle got clogged so they had to inject him a second time. But, my boy handled it better than any other time for the BIG ONE.

I never would have thought that I would be talking about shots, genetic diseases, IGF-1, biweekly blood draws… wow.

...that my husband ROCKS! He has been handling the shots and the like so much better than I would have ever imagined! These are things that we didn't bargin for but, I am sure glad that he is in this with us!

…that I am sooooooo glad that school is almost out! Bring it on…. Summer!

Young and Old at the Same Time?

2009-06-02T23:02:00.000-07:00

I received a friend request the other day on Facebook from a old friend from high school. Someone that I hadn't spoken to or heard from in 20 + years. He said that he had been looking for me for a long time and it took 10 minutes on Facebook. Crazy, this phenomenon!

What I find so weird is that it made me feel young and old at the same time. It doesn't feel like I have been out of high school for 25 years and that I am 43 years old. Today a Facebook friend request sent me down memory lane to the early eighties and working at a McDonald's for 3.75/hour. Listening to music by Def Leppard, Van Halen, and the like and cruising around town in a 1974 white Mazda station wagon that my parents had given me, thinking that I was sooooo cool. What a fun trip that was.

But, I had to return to 2009 and face the reality that I am 43. Which isn't all that bad really!!!!! I just never pictured myself being in my forties with gray hair, wrinkles and all the creaks and groans of my knees.

I wouldn't change my life or things that have happened to me. All the experiences that I have had make me who I am today and I kinda like who I am. Creaks, groans, gray hairs and all!

Check this out! Dian. Circa 1982.

Update on Scott

2009-05-13T11:59:00.001-07:00

Here is a copy of the latest email that Chuck has sent out:

Greetings All,

I don’t remember the last time I emailed everyone, so I think an update on Scott is overdue. Praise God, we have mostly good things to report. I’ll try to keep this at a high level to keep this as short as possible.

Bad news (this is the one bad thing, so I’ll just get it out of the way 1st):
· I think the last time I sent an email, we were excited that his growth hormone levels were dropping down to near normal. Well, the blood test after that email showed his levels had gone back up, which means that the Octreotide is not completely effective for him. Because of this, he has to add an additional injection (Somavert, for those of you medically inclined out there) every other day (that’s the worst part of this). Dian and I will have to give it, which is something new for both of us. Today, a nurse came over and showed us what to do. Dian actually prepared the injection and gave it to Scott.

Now for the praises:
· Although we have to inject Scott every other day, the needle is really small. I believe it is just like the needles that diabetics have to give themselves. Scott said he didn’t even feel it (I believe him; he didn’t even flinch when Dian gave him the shot in his arm, even though he was watching her do it).
· Scott is doing much better with all of the shots. We had a crisis point a few weeks ago when we had to stop his MRI midway through because he refused to let them give him an injection that was part of the MRI. That seemed to be a turning point. He decided he had been “stupid” (his description of himself, not ours) and would do better, which he has. He is such a brave guy! Thank God for this, this is a real answer to prayer.
· A CT taken of his skull several weeks ago indicated that the bump on his right cheek is either unchanged or slightly improved. Dr Collins felt comfortable enough to extend the time until his next CT for this to six months, instead of every 3 months as originally planned.
· An ultrasound of his Thyroid gland revealed nothing new. It isn’t a normal Thyroid because of the MAS, but it is functioning normally.
· The MRI (done without contrast a few weeks ago – this was the one we had to stop because he refused to allow the injection that would give them the contrast MRI) showed that his pituitary has shrunk back to normal size! So, even though his growth hormone levels are still high, the Octreotide is at least helping some. This is a huge praise. This lessens the risk to his optic nerve, as the pituitary is now not right up against it. He finished the MRI today and did a great job with the injection – no fighting being given the shot!
· He still seems to be showing no ill effects. This is so wonderful and such a blessing, because we know of others with MAS that have had their daily activities curtailed, due mainly to the fibrous dysplasia in their bones. Scott has been playing Little League baseball this spring and enjoying it very much. I especially treasure every game, because his situation could change at any time, and he might not be able to keep on playing. As it stands now, we’re planning to sign him up for the fall season. I can’t wait! (I love watching Scott play and being as involved with it as I can – I think I have more fun with it than he does).
· We have had no problems at all with insurance. Everything has been approved with no problems; everything has been covered (minus the co pays, of course). We are so blessed to have good insurance. Each of us has a $500.00 stop/loss amount for prescriptions, meaning that we don’t have to pay more than $500.00 each per year in prescriptions. This is really good, because we will exhaust this amount just with Scott’s Somavert in 2 months.

Please Pray:
· First of all, please thank and praise God for how good He has been to us through all of this. He continues to show his love, care, and control each day.
· For Scott, that the Somavert will be effective in conjunction with the Octreotide and his growth hormone levels will drop to normal soon. Long term, I ask that his levels would drop to the point where his doctors determine he can stop taking the Somavert (I don’t even know if this is possible, but I would love to see this happen).

We serve a great God! Dian and I are grateful to each of you and we thank God for you and your prayers and support. Please keep them up. Also, we want to support you in prayer as well, so please send your prayer requests to us.

God’s Blessings to you all,

Chuck and Dian

Thank you all so much for your support and prayers!

My Son, the Slugger

2009-05-08T08:34:00.000-07:00

Scott has been playing Little League for the first time this spring and has really been enjoying it. Yesterday at the game, my boy hit his first HOME RUN!

It was very exciting! The only problem was that Dad wasn't there yet, he had a meeting that kept him late at work and then late to the game.

Here are a few pictures of my "Pirate".

A Whole New Me...

2009-04-09T13:19:00.000-07:00

If you have known me for very long you know that I LOVE change and one of the things that I change a lot is my hair! I have been long, blond with sprial perm, short blond, red, brown with highlights. I have even grown it at donated it to Locks of Love.

But, the one color that I haven't ever done is....

Black. Black with subtle "Wild Orchid" highlights!! I am getting daring in my 43rd year!

What do you think? Be honest! Really, I can take it! I want to know.

Updaate on Adam

2009-03-27T11:11:00.000-07:00

Here is an email from my friend, Michelle. She is giving an update on her son, Adam.

Thank you all for your prayers! He is SO GOOD!

Hello friends:

I appreciate all of the prayers, kind notes and calls, it meant so much to Richard, Adam and myself. I wanted to give you a quick update on Adam...so often we forget to follow up when we've asked for prayers.

We were so worried that as we took Adam off medication prior to going to the hospital that our weekend would be filled with seizures....that did not happen. We actually enjoyed a very normal weekend prior to going to the hospital on Monday. Upon arriving at Children's in Cincinnati, Adam had his first seizure in Admitting. That day he had 4 more seizures each progressing in severity and length. They gave Adam Valium to end the last seizure (over 5 minutes is bad) which had the opposite affect than what you might expect....he was up all night. The following two days he was seizure free, but extremely tired, and was calm through all tests. Thursday he had 5 more seizures which were pretty bad, also 3 on Friday but none since...praise God.

Praises:
Adam had a lot of seizures that they recorded and got data on...this will help determine how we will move forward concerning surgery.

Adam was so unbelievably calm during the battery of tests it was only through the Grace of God!

I was unbelievably calm - many of you know the anxiety attacks that I got when I was in the hospital delivering Walker...none, and I slept....with the help of ear plugs of course.

Carolee handled Hudson (4) and Walker (11mos), cooked, cleaned and did all the laundry...what more can I say ;)

The seizures only occurred at the hospital....once we got home he hasn't had one since!!!

We were helped by so many...our wonderful neighbors that took Hudson on playdates and checked in regularly on Carolee, Adam's teachers coming to visit, my dear friend Stacey visiting twice, all the cards, balloons, video messages, stuffed animals, and notes from Adam's classmates....it was unbelievable!

Everyone at the hospital was awesome...the nurses, the doctors - we felt as comfortable as we possibly could.

We'll be meeting with the doctors sometime in April - mid to late - to discuss their findings. I'll let you know what they have to say...if we do go for the surgery it will be sometime in July or August.

Love,
Michelle and her guys!

A Prayer Request

2009-03-16T21:09:00.000-07:00

Our dear friends, the Schultze's have sent out a prayer request for their son, Adam. Below is an email that Richard sent out.

Please, you wonderful prayer warriors, take Adam, Michelle, Richard, Hudson, Walker, and Carolee to the Throne of Grace.

You are all wonderful! Thank You!

We have some prayer requests for us.
Adam is in the hospital this whole week having tests done. We reached a point where medications were not controlling his seizures and we went for a consultation on having brain surgery to help resolve his epilepsy. The doctor mentioned two stages of advanced testing beyond the MRI and EEG's he's had done in the past.

The first stage involves a full week of hospitalization (this week) where he is weaned off of 3 of his 4 seizure medications to immediately induce seizures. It is working
since he had 3 today so far, 2 of them major. He will be monitored constantly to get detailed data on what is happening inside his head during seizures.

After these tests, the doctors will evaluate and decide whether to
proceed to the next step which is opening his skull and placing electrodes
directly on the brain. Once this step happens doctors are able to isolate
the seizure activity and then remove parts of the brain that cause the
seizures. They shared an example with pictures of a boy's brain that they
operated on who has now been seizure free without medication for 3 plus
years.

We hope to be at this phase some day.
Our prayer requests are that:

God would shield and protect Adam from the pain and inconvenience
of this testing; and that no harm would come to him during this week of seizure
activity.

The Lord will be with Michelle and grant her rest and strength as
she will be at the hospital constantly while doing things like helping to keep
Adam awake until 3am for the next couple of nights. She will need extra
grace to cope.

Our other children Hudson and Walker will not exhaust or tax
Carol Lee (Michelle's stepmother) who is helping at our house. She will
need extra grace to cope as well.

We love and miss you all.
All God's blessings to you.
In Christ,
Richard

What a Year it Was!

2009-03-03T19:46:00.000-08:00

I was reviewing my 2008 calendar for tax stuff... not my favorite thing to do, by any means. Taxes, that is, not review my calendar. I actually love that. I love calendars!

I have two that I work from and every couple of days I "sync" them up and I love it. One of my favorite things is a new calendar and getting it ready for the next year. It excites me to think about what might fill up those pages in the year ahead!

So, as I was looking back I decided to share some of what I found for last year.

January:
Playdates with my Treasured gals.

A funeral for a 2 year old girl, the daughter of a fellow Treasured leader. It was heartbreaking.

A interview with the Stepping Stones team at Saddleback Church.

February:
Family birthdays.

Legoland with our friends, the Schultzes.

A train ride to San Diego.

The Daytona 500-- 2008 racing begins. I love racing.

Picking up friends at the airport.

A new dishwasher.

March:
Scrapbooking day with friends.

Dentist visits.

Trip to Phoenix for Easter break.

Starting at Stepping Stones.

More family birthdays.

Spending time in 29 Palms with friends.

April:
Ashlyn's birthday.

Four year old check up. 95 percentile for height. 97 for weight. She's a bit chunky.

Walker, our friend's baby, was born.

Baby showers.

May:
Treasured session ends for the spring.

Stepping Stones continues... who knew that I would LOVE working with kids!

Chuck has jury duty.

More playdates.

My sister and her husband's first missionaly trip to Bolivia.

We have to put Madison, our faithful dog of 10 years, to sleep. She had melanoma. We still miss her.

June:
School is out.

Scott's birthday. 7 year check up. Dr. finally concerned about his growth. Refers us to pediatric endocrinologist.

Swim lessons begin. Scott loves it. Ashlyn is not as in love.

Two families move. The Traquairs to Japan. The Schultzes to Ohio. We really miss them all!!!!

July:
Celebrate the 4th in the traditional way. Pancake breakfast at El Toro High School. Lake Forest Parade. Fireworks at Laguna Hills High School.

We discover that Kira won't be attending parades with us in the future. She barked, lunged, and went crazy over every person, dog, and float that passed by. It wasn't fun for any of us.

Summer T-Ball season starts. Scott loves it again. Dad loves it more. Ashlyn, you guessed it... hates it. She only sits and plays in the dirt. We finally give up after 3 weeks.

Scott goes toSummer Spectacular at church (Vacation Bible School).

Our first appointment with the endocrinologist. She mentions a name we've never heard before, McCune-Albright Syndrome. We have the first inkling of "something's up".

Our "Summer Vacation" a day at the Orange County Fair. Great Fun!

August:
Baby Jessica is born. Our newest niece.

T-Ball (for Scott) continues.

Swim continues.

Playdates continue.

An MRI.

A phone call a few hours later from the endocrinologist. "Your son has a tumor on his pituitary gland."

We feel like our world has fallen apart.

We send out an urgent prayer request, which a family member posts on her blog. A wonderful lady in Louisiana comes across it after a search that morning for McCune-Albright Syndrome, which she hasn't done in months. She contacts our family member with information that we take into the endocrinologist about a Dr. in Maryland and The National Institutes of Health. She encourages us to contact him regarding Scott.

Bone scans.

X-rays.

Ultrasounds.

Geneticist visit.

Oncologist visit.

Neurosurgeon visit.

Dinner and movies with wonderful friends.

Mammogram (everything looks good -Thank God)!

Pediatric orthopedist visit.

ENT visit.

Wonderful support, responses, prayers and encouragement from family, friends, and people worldwide. God is so good!

September:
More ultrasounds.

Angel games.

Hearing test.

Vision tests.

New roof installed.

Invitation to join research Study on McCune-Alright Syndrome at NIH in Maryland.

Urologist visit.

More playdates.

Our 19th wedding anniversary. Am I really old enough for that?!?

Fedexing records to Dr. in Maryland. I had no idea how expensive that was! But, well worth it.

School starts.

Treasured session begins for fall.

October:
Scott starts in a Bowling League.

Family visits the La Brea Tar Pits.

Tests to see if Scott is in puberty. He's not. Thank God!

Chuck and I enjoy an overnight stay at the Marriott in Anaheim.

Halloween. We had a fairy princess and a marine.

Firm dates for our visit to Maryland. November 15-22.

November:
Day out with Thomas the Train with Grandpa and family. Perris, CA.

Dentist visits.

My sister and her husband's second missionary visit to Bolivia.

Plane flight for Scott, Chuck and myself to Maryland.

Darrel and Barbie take care of Ashlyn for the 1st few days.

My sister comes here stay with Ashlyn for the rest of the week while we're in Maryland.

Visit NIH, Washington D.C.

Lots and lots of test for Scott.

Good news. Not so good news.

Thanksgiving.

December:
Christmas parties.

Trip to Disneyland. We love it at Christmastime.

Christmas.

Filling out my new calendar. Looking forward to the next year.

New Years Eve. The kids actually stay up til midnight. We all go to bed at 12:01!

Now, you may be asking yourself, why did I just waste several minutes of my life reading that? Or maybe, what was Dian thinking? That we would be interested in reading that mundane stuff?

Well, here's my point. We go along in life, dentists, new roofs, baseball games, racing and just life. Then one day some ones says, "McCune-Albright Syndrome" or whatever and your world falls apart. But, the mundane stuff still continues and we have to face that. But, I can see in looking back over the year how God has been at work in our lives and through the prayers and encouragement of others. I have come to have a peace about our lives. Who knows what may be coming for any of us, but I know that everything is "Father filtered", meaning that God looks at it and determines whether or not He will allow it in our lives. That's what one of my favorite Bible verses talks about. Romans 8:28 "And we know that all things work together for good for those who love God, to those who are called according to His purposes."

Thanks for reading!

Boogity, Boogity, Boogity

2009-02-15T20:13:00.000-08:00

Let's go racing boys!

OK, now let me explain to those of you who don't know that I have completely fallen in love with... NASCAR! Today was the beginning of the 2009 racing season with the Daytona 500 in Daytona Beach, Fl. I have been looking forward to this day for months!

Now, if you had told me several years ago that I would have just typed that, I would have laughed and said, "No way! Not that redneck sport!" No offense to the rednecks reading this, I mean no disrespect! That was just my impression.

Darrel & Barbie, our wonderful friends and chosen family who have a Big TV with HD, love racing as much as we do (well, Scott and I anyway). They Tivoed (is that a word?) the race and we went over to their house after church (You have to keep your priorities, right?).

So with all the flash of the Super Bowl and none of the wardrobe malfunctions, racing started today with a prayer, The Star Spangled Banner, a fly over by a formation of F15's and the words that I have been waiting to hear. Darrell Waltrip, a former race car driver and now a commentator for Fox sports, begins each race as they come to the green flag by saying "Boogity, Boogity, Boogity, let's go racing boys!" And off the 43 cars roar. It is so cool.

My favorite driver is Elliott Sadler, who drives the #19 car. He used to drive the car that was sponsored by M& M's; now you know why I liked him back when we started watching... chocolate. When he changed teams, it didn't seem right to not be his fan anymore! So Elliott it is.

Today he actually led several laps and almost won the race. If they had called it for rain just a few laps before they did, he would have. Oh well, don't they say timing is everything?

Now you may be asking yourself, "How did they get into racing?" Let me explain... When Scott was little he loved cars with numbers on them and one day when Chuck was watching a ball game on Sunday afternoon he flipped the channel to look for another game and came across a race and Scott (who was 3 at the time) was immediately captivated by the cars with numbers and then by the crashes. So it began with that. Scott then wanted to buy the cars and learn about the drivers and the rest was history. He called it "Hit Racing" for obvious reasons!

So the next time you pass by a race on TV, take a look! You may fall in love!! HA!

On another note, the shot on Friday went pretty well. Scott began to struggle a little bit and then we started praying and he calmed down. Afterword, we went to Krispy Kreme to get a donut. His cheek is still sore, but (pun intended), he's doing fine. Thanks for your prayers for my boy, you don't know how much I appreicate them!

The Big Shot

2009-02-12T17:42:00.000-08:00

Tomorrow is the day of the "Big Shot" for Scott. Please pray for him that it won't be a trauma like it has been the last couple of times. I know it hurts him and it breaks my heart, but he has to get used to them as he will be having a shot or blood draw every other week for the foresee able furture and probably the rest of his life.

Thank you all!

What's Love Got to Do With It?

2009-02-07T10:24:00.000-08:00

Everything! I have been thinking this morning about love. Love is an amazing thing. It has so many different meanings and applications. I love chocolate. I love dogs. I love tulips. I love my kids. I love my God. I love Jesus. I love my husband. I love rainy days (it's raining right now). I love coffee.

Speaking of coffee and my husband. I really love that man! How does he show his love for me, you ask? (You didn't - but humor me!) He sets my coffee pot up each night and sets the timer so when I stumble out in the mornings, there it is; a beautiful, hot pot of the "Elixir of Life", otherwise known as coffee (did I mention that I love coffee). He will even stop in the morning before he leaves for work and start a pot, if he forgot the night before. Sweet, huh?

Right now my love is watching "The Pirates Who Don't Do Anything" (a Veggie Tales movie) with the kids. Who doesn't love a bunch of talking cucumbers, gourds, and grapes! Actually the movie has a good message about a father who is always there for his kids and will supply them with what they need to accomplish what he has given them to do. A very cool analogy of our Heavenly Father and how when He calls us to do something, He will provide us with the "tools" that we need to accomplish it, even if we don't think we can do it.

Like when you hear the words: cancer, tumor, McCune-Albright syndrome, pink slip...

Fast Forward a few days: Ok, I got side tracked, very side tracked! Talk about a crazy life.

Anyway, as I was saying. Love is an amazing thing. I have recenlty come across a "New Favorite" bible verse. It is:

The Lord your God in your midst. The Mighty One, will save; He will rejoice over
you with gladness. He will quiet [you] with His love, He will rejoice over you
with singing. Zephaniah 3:17 NKJV

Wow, how awesome is that! I can't imagine how beautiful it must sound when He sings! And what does He sing. "Whoops, she did it again"? Probably not! But knowing that we are so loved that it invokes breaking out in song! Or maybe a lullaby? How many times when we are crazy with grief or fear does He sing a song to quiet us? What a thought!

This verse has been impressed on me several times this week at work. I have been in with the 2 year olds and when they are crying and oh so upset that mom has left them a song will usually quiet them down and distract them. (Finger puppets hidden in my pocket help, too).

So the next time I am "freaking out" over something that has happened or a new situation in my life, I hope that I slow down and listen for the lullaby that God is singing and remember to thank Him for it and His wonderful love for us!

Happy Valentine's Day!

OK, I have to add something else! I just noticed in the dictionary (yes, I am a horrible speller and went to Word to check on lullaby). The first definition was: a gentle song for soothing a child, especially into sleep. I am so glad to be a child of God.

The Power of Prayer

2009-01-17T10:08:00.001-08:00

As if I needed any more proof that prayer works!

This past Friday after school we took Scott in for his next shot. He started to get upset again; as I held him down I began to pray, "Lord, help Scott. Help the shot not to hurt, etc..." He calmed down and the next thing we knew the nurse was saying, "It's done!" So next time we start praying before the weeping and wailing starts! Seriously, I am continually amazed at how God blesses us and answers our prayers. He really wants to hear from us. How cool is that!!!

After the doctor's office we went to see "Hotel for Dogs", the kids had both really wanted to see it and we thought it would be a good "reward" for Scott. Then on to dinner at Scott's favorite restaurant Souplantation, where he loves the Mac & Cheese!

Thanks to all of our prayer warriors! You are awesome.

Here we go again...

2009-01-15T13:35:00.000-08:00

Tomorrow Scott has to go in for the 3rd shot of the drug that will (hopefully) block the growth hormone that his pituitary gland is producing an overabundance of. The first shot he had was in Maryland at NIH, the second was here at our pediatrician’s office.

It went pretty well, if you don't consider that he was kicking and screaming and that Chuck was lying over his legs and I was lying over his upper back to hold him down. So with us lying there, the nurse grabs him and jabs the shot in so fast! I don’t think I have ever seen a shot go so quickly, I am certain she just wanted out of there!

It reminded us of the scene in "Finding Nemo" where the pelican flies into the dentist’s office and chaos breaks out. Ashlyn was afraid and slowly backing out of the room and when Chuck noticed her leaving he could see the receptionist and the people in the waiting room. Eyes as big as saucers and mouths hanging open is what he said he saw!

We made the mistake of telling Scott last time that it was coming up soon, so we haven’t yet told him that the shot is coming. Please be praying that he won’t get so worked up and that he wouldn’t even feel the shot. (It’s a big gauge needle and a thick liquid so it hurts when he gets stuck and when the drug goes in). Also, please be praying that the shots will be effective, if the levels of growth hormone (IGF-1) isn’t lowered enough by this drug, we’ll have to add a second one, which would be a daily shot (once or twice daily), I really don’t want to have to do that!

The Things that Kids Say

2009-01-08T16:51:00.000-08:00

Today at work, I was in the two year old room and one of the little boys had a scratch on his face and we asked him, "How did that happen?"

His reply, "I bounced and then I was fine."

I just love the things that come out of kids mouths!

Prayer Request Update

2008-12-29T20:33:00.000-08:00

We have just found out that John Portlock, the man that we had asked for prayer for, has passed away.

Please continue to pray for his family, for their comfort and strength during this time.

Thanks prayer warriors!

Christmas Memories

2008-12-28T10:19:00.000-08:00

Wow, Christmas has come and gone. I don't know whether to be sad or relieved! It seems to come faster each year and a little bit harder to prepare for (maybe that's just me... I don't know).

However, we had a great holiday and here are some pictures to prove it!

We had the traditional "big" dinner at our house on Christmas Eve (ham, roast, potatoes, green bean casserole, etc). Scott and Ashlyn had the normal chicken nuggets and applesauce. No adventure in those two, at least when it comes to food. They don't know what they are missing.

Baby Jessica and mom, Natasha are both beautiful. Don't you love the little Santa suit! What a cutie!

They really do love each other... or maybe it's the Christmas spirit or that Santa's coming soon... hmmm.

Even Kira gets into the Christmas spirit!

We celebrate Jesus' birthday with a birthday cake. I asked the kids what kind of cake they wanted me to make for Jesus and the answer was, CHOCOLATE. What else would it be? It was a really good cake, if I do say so myself. We sang Happy Birthday to Jesus, it's a good thing that He has unconditional love for us, because we can't sing worth anything!

Natasha's mom and dad, Michael and Tomara have recently immigrated from Russia and they were with us this year. It was good having them join us. Natasha translated for us.

Scott and Ashlyn wanted to leave cookies and milk for Santa...

Scott and Ashlyn wanted to sleep together in Scott's bed and we said it was o.k. They were so excited they thought they wouldn't go to sleep, I think they were in dreamland in just a few minutes. One of them, I don't remember which one now, was awake at 4:00am wanting to start Christmas. I said go back to bed....

We ended up not waking up until 8:00 or so... which was so much better than 4:00 am! Anyway, the kids were both happy with the gifts that Santa brought!

My sister and brother-in-law, Cynthia and Tony, gave us some wonderful things from Bolivia. The blanket works really well for naps! I have already given it a "test drive"!

We had a great Christmas! Our families are so wonderful and generous. I hope that you had a great Christmas as well!

Urgent Prayer Needed

2008-12-24T10:15:00.000-08:00

First, I must say so sorry that I haven't kept my blog updated...

Second, (and more importantly). Chuck's boss, Laurie, called this morning with a prayer request for a dear friend's husband, John Portlock. He was in a motorcycle accident over the past weekend and has very little brain activity and the doctors aren't hopeful for a good outcome. John has a wife and three young children.

Please pray for a miraculous recovery for John and comfort for his family. No time is a good time to go through something like this, but at Christmas time it just seems worse.

Thanks to all you faithful prayer warriors! We know that prayer works! Praise God!

Thanksgiving and Praise

2008-11-26T07:42:00.000-08:00

This is the time of year when we reflect on what we are thankful for; these are a few of mine...

-- A loving, caring, merciful, forgiving God.

-- A loving, supportive, wonderful husband.

-- Fabulous kids, who get along (most of the time).

-- A wonderful, generous, loving extended family; aunties, uncles, grandparents, & cousins.

-- "Adopted" parents/grandparents, Darrel & Barbie.

-- Old friends and new friends.

-- Prayers, cards, emails, and encouragement from those friends.

-- A good dog, who likes to snuggle.

-- A son who is goofy and kind of a dork, just like his mom.

-- That Scott's illness is manageable. Not terminal or debilitating.

-- That there is a treatment for the excess growth hormone.

-- That Scott is not in precocious puberty. That the external signs of puberty that he has can be dealt with.

-- A daughter who is independent and strong even though it drives me crazy sometimes. Pray for me!

-- That Ashlyn loves to dance around and be silly.

-- Coffee (the stronger the better).

-- The doctors who we have met recently. That they are caring, knowledgeable and willing to share their time.

-- Nurses.

-- NIH (National Institutes of Health).

-- That Scott hasn't had any side effects to his new medication, at least as of right now.

-- Good news. It is always welcome.

-- Bad new. It makes us trust in God and strengthens our faith in Him.

-- Target. I love to shop there.

-- Books. I love to read.

-- My own bed!

-- Chocolate.

I hope that you all have a very Happy Thanksgiving!

Scott in Washington

2008-11-25T09:04:00.000-08:00

This video was taken on Sunday, Nov. 16th. We are in the Memorial Park near the Lincoln Memorial and the WWII Memorial. He was having a ball!

Home Sweet Home

2008-11-23T16:44:00.000-08:00

We got home last night and boy, did it feel good to sleep in our own bed! The flight from Dulles (Washington DC) to LAX was uneventful, but very long. We were all very anxious to be home.

Everyone at NIH was wonderful, everyone we met was friendly, caring and warm. With the exception of the lady in the voucher office. When it has to do with money, I guess it makes a difference!

This is Anne. She was Scott's favorite nurse (ours as well). She is with the Public Health Service; that is why she is in uniform. The Public Health Service is under the Surgeon General's office and while they aren't deployed overseas to a combat situation, they are sent out when there is a natural distaster. See, you learn stuff all the time--who knew that there was such a thing!

Anyway, Scott said that he wished that she lived next door to us, so he could see her all the time.

This is Marilyn Kelly, she is Dr. Collins' research nurse and is a wonderful lady. She was very helpful and encouraging every time we saw her.

This is Dr. Collins. We were very impressed with him, his caring, knowledge and willingness to answer all our questions without rushing us was wonderful. Again, another blessing.

God is so good in how He directs our paths and uses the people in our lives in ways that can be so unexpected! We feel so blesssed to have been directed to NIH. What an amazing experience!

I don't think that I have yet begun to process all the information that we learned while there. I suppose it will take awhile to sink in. One thing, though, that doesn't have to sink in is all of you.

THANK YOU so much for your prayers, emails, cards and encouragement. I have felt your prayers in such a wonderful way. The strength that I have had over the last several months has come from those prayers; I can't thank you enough.

Is it Wednesday or Thursday

2008-11-19T07:59:00.000-08:00

Wow! What a few days it has been... I had to be reminded just now that it is only Wednesday, not Thursday. Whenever you are out of your own routine it seems that we loose track of all time. I guess that's OK, right?

Today has been a "easy" day as far as that goes. Scott had an consult with an ENT to go over the hearing test and an exam. Then on to get an ultrasound of his gallbladder, testicles and thyroid. After that we are free until 1:30, when we have an appointment with the Ophthalmologist.

We were able to get out last night and have dinner at Chipotle and shopping for a new pair of shoes for Scott. The "foot guy" (only because I can't remember his title) recommended New Balance shoes, they work well with the orthotics and there is a New Balance store just two Metro stops away. So off we went.

So, Mr. Scott now has the most expensive shoes that any of us have ever bought, not that I mind of course. Now, when Scott out grows them he can hand them down to his daddy (same size as his dad wears, I think).

It has been eye opening here, seeing all the kids here with very obvious illnesses. Kids in wheel chairs and walkers, one child has been here for 5 months. There is another child here with MAS this week, a girl. Her name is Sophia and she's here with her mom from Atlanta. We have been getting to know them and it is comforting to talk to some one that is on the same road that we are on. I have been praying for a opportunity to share with Joyce (Sophia's mom), I know that she is overwhelmed. Please pray that I get the right moment and the right words to say to her.

Also, please be praying for Billy, he is the boy with MAS that we have been introduced to via the internet/email. He and his mom, Catherine are traveling to Connecticut to have surgery to remove his thyroid on November 20th.

We have met so many wonderful people this week and have had very positive experiences. Praise God! Scott's nurses have been wonderful. They truly run things around here! Kudos to all you nurses out there!

I know that I have been rambling all over the place, please forgive me. But, thank you for reading and praying.

A Picture is Worth A Thousand Words

2008-11-17T17:58:00.000-08:00

Here are some pictures from our day in Washington D.C. We had a great time, as you can see.

These are of Scott's room after we checked him in. He was excited to see the computer/TV!

-Today was a busy day, starting with blood draws at 7:00 a.m. and then on to X-rays, next stop breakfast for Chuck and I (at the cafeteria here - not so good!). After that, audiology for a hearing test (everything was good there, only when his mom says to stop playing does he have hearing problems). Then we met with Dr. Collins and his team. We are both very impressed with him. Next stop a 9 minute walk/run test with a rehabilitation doctor to check his gait and joint mobility and strength. It was probably the only time a kid is told it's OK to run in the hospital halls! We learned that his joint mobility is ok, but Scott will need to have orthodics (not sure if that's the right spelling...) and a lift in one shoe. One leg is 1/4 of an inch shorter than the other. More on that later.

Next, we went the pain management clinic. Even though he is not having any pain now they wanted to introduce us to them, in case we need them in the future.

That was our last appointment for today. We were able to take Scott out on a "pass" and have dinner at the Children's Inn and then we went to the grocery store for some supplies. That was an adventure. We had to ride the Metro to the Bethesda station and then a short walk to Safeway. Then a short walk back to the Metro, with groceries and a case of water split between 2 backpacks and several grocery sacks. Glad I don't have to do that every day!!

Please keep praying for these things:

-- Continued wisdom to ask the right questions of the doctors, nurses and therapists we will be meeting with.

--That Chuck and I would get better sleep.

--Safe travel for Cynthia from Phoenix to Orange County.

Thanks again for all your emails, calls and support. We appreciate it so much!

From the Fire...

2008-11-16T17:42:00.001-08:00

Today was cold! For the gal who grew up in New Mexico and then lived in Wyoming the upper 40s and some wind was almost too much! Maybe.

I am posting this from Scott's room here at the clinic/hospital. We got him checked in and fed dinner, now he and his daddy are in the playroom playing Baseball on the Nintendo they have for patients. I can hear Scott's giggling from here!

We spent the better part of the day today sightseeing around D.C. We rode the Metro (the local subway) to the Mall (the area between the Capitol and Washington Monument). On either side of the mall between the two are the various Smithsonian museums. Scott wanted to see the White House, so we went to the visitors center to find out about tours and discovered that they have to be made with your Congressman's office, by reservation. So file that away if you are planning on visiting this area. We were able to see the back side of the White House, the World War II memorial, the Washington Monument and a quick "breeze through" the Natural History Museum.

Scott will start the various tests tomorrow morning and have some busy days coming up. He is a little nervous about these, please pray that he won't be nervous and that all the tests will be easy and pain free.

Pray for Chuck and I that we will get enough rest, so we can be available and "present" with Scott and the various doctors we will be working with.

I will post the pictures from today later, I don't have a way to upload them in Scott's room.

Thanks for you prayers!!

We Made It

2008-11-15T18:02:00.000-08:00

It is only 8:00 p.m. and we are wiped out -- it has been a long day! The alarm went of at 4:00 a.m. and we scrambled to the out the door at 5:00 a.m. We made it to the airport in plenty of time to get through security and make it to the gate with just a few minutes to wait.

It was fun to watch Scott's excitement at the plane ride and beginning this adventure. He enjoyed the movie, Wall-e and a variety of video games that the airline offered. It as a good flight.

We left California on fire and landed in Maryland in a rainstorm. There had been an tornado warning issued while we were in flight, but by the time we landed it was mostly over we just got to see a beautiful double rainbow. What a blessing!!

I will share more later, I am off to bed now. Here are a few pictures of the day:

Thanks for your prayers! Keep it up, they are working!

Getting Ready for Maryland

2008-11-12T10:24:00.001-08:00

We leave on Saturday, November 15 bright and early. A special thanks to Darrel, who is willing to get up before the crack of dawn and take us to the airport at 5:00 a.m.

For whatever reason this trip seems so much more difficult to prepare for than our 2 week camping vacation to Yellowstone a couple of years ago. I guess maybe it’s the reason we are traveling. I am very anxious to get there and get going on treatment for my boy.

We told Scott last week that he had MAS. We also to him that God knew he had this condition even before he was born, and that God had made him exactly the way He wanted him, and that he is very special to us. We also told him that the place we are going does research on people with this condition and that Scott could actually help them help others as they learn more about this condition by running tests on Scott. We also told him they have medicine that will help slow down his growth. Scott took the news well. He is excited about the trip, even though we told him most of the time he will be inside a hospital. He did ask a few questions, which opened the door just a bit into what he may have been thinking about all along. Based on his questions and comments, I think that Scott wishes he was the same size as the other kids his age, although he has never come right out and said this.

I asked him last night if he was nervous about going and he said that he was. I asked him in what ways and he didn’t want to answer me he just said a lot of things.

In a different conversation with Ashlyn, we told her that we were going to be gone for a week and that she was going to have Darrel and Barbie and then Auntie Cynthia here to stay with her, her response, “Today!?”, so much for us worrying about how she was going to take the news! That’s my independent girl.

Please pray for these things:

-that Scott isn’t nervous and that he’ll have a peace about the whole week.
-travel safety and that there are no flight delays. We have to be at NIH by 7:00 to be able to stay at the accommodations they have there.
-travel safety for Cynthia, first from Bolivia then on to Orange County.
-that we all stay healthy.
-for the free time that we have, that it will be fun.
-for the doctors, nurses, etc… who will be part of Scott’s care, for wisdom, knowledge, etc…
-for Chuck and me that we have the wisdom to ask the right questions.
-for those who are taking care of Ashlyn, Barbie & Darrel from Saturday to Tuesday and Auntie Cynthia from Tuesday night to Saturday when we return.
-for Ashlyn that she’ll have fun and feel special with all the “focused” attention. And that she won’t miss us much.

A Day Out with Thomas the Train

2008-11-11T17:06:00.000-08:00

This past weekend we all (Chuck, Dian, Scott, Ashlyn & Grandpa Tom) went to The Inland Empire Railway Museum in Perris, CA to spend the day with Thomas the Train. It has become something of a tradition to go to each Veteran's Day weekend.

I think that Scott may be out growing his love of Thomas, but he still loves trains. When Chuck asked Scott what he was looking forward to the most was, Scott said, "Spending time with Grandpa." How cool is that! Grandpa loves trains as well (he has a whole train layout in his garage at home and Scott loves to visit him and "play" trains).

We rode on a train "pulled" by Thomas, a cabooses train (only cabooses on the train, no rail cars), a trolley, and saw lots and lots of train "parts" (for the lack of a better word...). The boys loved it! Ashlyn and I spent a fair amount of time at the petting zoo, which we enjoyed feeding the goats, pigs, and a pony. She enjoyed the the temporary tattoos or "sattoos" as she calls them. She kept rubbing them off so we could go back and get more.

We had a great day! I can't say that I love trains very much, but I love spending time with my family and watching them have fun!

Here are some pictures of our adventure. Enjoy and Toot Toot!

You can't miss the fact that they are father and son, can you?

On the cabooses train, riding in the cupola on the top...

Riding on Thomas...

Always the princess!!!

Aren't they adorable? Sleeping in the car on the way home.

I thank God so much for the family that He has blessed me with!!

Pray for the Boliva Team

2008-11-11T08:50:00.001-08:00

Another call out to the prayer warriors out there...

I just finished checking the blog for the team that is in Bolivia right now, including my sister, brother in law, and several members of their church in Phoenix, Arizona.

Apparently, all of the team members are suffering from altitude sickness to one degree or another. One member had to be taken from the village of Confital (13,000 ft) to the hospital in Cocahabamba (8,000 ft) with severe symptoms of altitude sickness and is doing much better. Another team member has turned her ankle and is very uncomfortable.

Please lift up these folks to the Throne of Grace!

Thanks.

Halloween Memories

2008-11-02T15:23:00.000-08:00

Here are a few pictures from Halloween. We had a Fairy Princess...

and a Marine for the second year in a row...

We went to the "Trunk or Treat" event at Saddleback in the late afternoon and then I went to work at Stepping Stones (childcare for the parents that attend Saddleback on Friday nights). Chuck, the Marine and Fairy came back home to Trick or Treat with Grandma, Grandpa, Darrel, Barbie, Uncle Steve and Auntie Natasha.

We had a sleepy Fairy on the way home from the event at Church....

Trick or Treat. They are certainly a treat for me!

Fun was had by all... you should see the MOUNTAIN of candy that we have! Bring on the Butterfingers!

Bolivia Here They Come

2008-10-29T17:27:00.000-07:00

My sister, Cynthia, her husband, Tony, and a team from their church, Horizons Community Church in Phoenix, Arizona are going on a mission trip to Bolivia. They leave November 4th.

Please join me in praying for them!

Please pray these things for them:

-Safe travel. They will have 9 flight connections in all.

-Safety while in Bolivia. The Bolivian government is unfriendly to Americans and there is an election coming up in November. There could be violent protests, etc...

-Flexibility for the team. To handle changes while there.

-Relationships within the team, that they would be a good testimony to Christ.

-That the VBS they are planning for the children would impact them and show the children God's love.

-That they will all stay healthy and have a great time.

Here are a couple of links, one to the blog page for the team going to Bolivia and a website for Horizons Community Church.

www.horizonscc.com/blog.htm

www.horizonscc.com/bolivia.htm

Now, if you all would indulge me, I would love to share some things with you about my wonderful sister.

Isn't she beautiful! She is my big sister, I always say, "she's 10 years older", but in actuality she's 9 years, 7 months and 17 days older. She has two grown children, a son who is a police officer and a daughter who is a registered nurse. She loves animals (they have 3 dogs, a cat and 2 turtles). She's creative, loving, outgoing and goofy(sometimes, just like me)! She has been a Pastor's wife for.. well, I can't say how long... at least 20+ years.

But, the most beautiful thing about my sister is her heart. As my Big Sister, she cared for me when I was a baby. In fact, my crib was in her room! When I would cry she would be at my crib before my mom got there, so they decided to put me in her room. She became a follower of Christ in college and led me to the Lord on summer vacation. I am so grateful to her for her willingness to share!

When mom was in the hospital for the last 52 days of her life (she died of leukemia), Cynthia sacrificed time with her young family to be in Utah to support us and mom. Likewise, when my father was dying from cancer and came to live at our home for his last few months, she spent several weeks here, just to support me and help care for dad (who by the way was her step-dad and not always the nicest to her. But that's another story, it just shows her heart).

When my children where born she was here, which in the case of when Scott was born was huge. I suffered with some post-partum depression and really needed help. She was here! I have to say "Thanks" also to Tony as I am thinking about all this. His heart is wonderful, too, and he has always been willing to let Cynthia leave to come help me.

Several years ago she began a job as a chaplain with a company called Market Place Ministries. She visits a number of different companies and is available for counseling, crises, employee assistance, etc... When she realized that a very large number of the people that she was working with where Spanish speaking, she decided to learn Spanish so she would be more of a help to them. So today I have a bilingual sister who amazes me with her dedication to the people she helps and the desire to learn more to help them.

This is just a snapshot of my sister, but I hope that you have seen how wonderful she is and how proud of her I am. I don't know where I would be in my life if it wasn't for her love and care of me over the years. Cynthia, I thank God for you! Much LOVE!

Here are some photos of her and her family. Thanks for reading!

We went on a trip to Sea World. Tony and Cynthia.

A day at the beach, she wasn't watching the ocean!

Tony, Rachel, Cynthia & Ashlyn

Tony, Rachel (daugther) & Andrew (son).

Thank You for Your Prayers

2008-10-28T16:08:00.000-07:00

Here is an update from my cousin, Kristi's, blog regarding her son, Kaleb. I wanted to pass along here since I know many of you have been praying. Thanks!

Kaleb Update
Kaleb's button continues to heal, but still has some swelling, redness and infection. He also has a granuloma around the site so we are watching that carefully. We still are not able to feed him at night through his button so we are praying he does not loose any weight. I got a call from Dr. Carey's office stating that the preliminary lung culture came back clean but we needed to wait on a final report for Thursday or Friday to be sure. Please continue to keep lifting both of these up in your prayers and thank you!!

Our Responsibility

2008-10-20T20:14:00.000-07:00

I was listening to a song the other day and I was struck by the upcoming elections and what they mean for our country. Not who’s in the Oval office, for we all know Who is in control and who He wants to sit in that office will be there, to fulfill His purposes. No, I was thinking more of the men and women over the decades who have willingly given their lives for us, so that we can go to the polling place and vote.

What was the song? A song by Mark Schultz, (to hear the song scroll to the bottom of the page and click on the music player below). Here are the lyrics:

Letters From War

She runs to the mailbox
On that bright summers day
Found a letter from her son
In a war far away
He spoke of the weather
And good friends that he'd made
Said I'd been thinking 'bout dad
And the life that he had
Thats why I'm here today
And that the end he said
You are what I'm fighting for
It was the first of the letters from war
She started writing

You're good and you're brave
What a father that you'll be someday
Make it home make it safe
She wrote every night as she prayed

Late in December
A day she'll not forget
Oh her tears stained the paper
With every word that she read
It said I was up on a hill
I was out there alone
When the shots all rang out
And bombs were exploding
And that’s when I saw him
He came back to me
And though he was captured
A man set me free
And that man was your son
He asked me to write to you
I told him I would oh I swore

It was the last of the letters from war
And she prayed he was living
Kept on believing and wrote every night just to say

You're good and you're brave
What a father that you'll be someday
Make it home make it safe
She wrote every night as she prayed

Then two years later
Autumn leaves all around
A car pulled in the driveway
And she fell to the ground
And out stepped a captain
Where her boy used to stand
Said mom I'm following orders
From all of your letters
And I've come home again
He ran into hold her
And dropped all his bags on the floor
Holding all of her letters from war

Bring him home

I have voted in every election since I have been able to. My first vote was for Ronald Reagan in 1984. Have I always been totally up on all the issues? – no. There have been times that I have only voted on the things that I understood and I abstained from those that I didn’t know. But, I have always been there. To honor those who have paid the ultimate price for me to be able to freely walk into that polling place. Not having to worry about if I am endangering my life or my family for doing the right thing.

If we don’t vote, just blow it off or think that one vote won’t matter we lessen that sacrifice. How can we be “Proud Americans” if we don’t appreciate what has been done for us and do this small part, in thanks to those brave and wonderful men and women? So get out and vote! Now, I’ll get off my soap box, but I will be forever grateful for the ones who have made it possible for me to be up there.

Thank you to those who are or have served – I appreciate you more than I can say.

God Bless

Calling All Prayer Warriors

2008-10-16T07:03:00.000-07:00

Chuck's cousin, Kristi, has placed this prayer request on her blog and we wanted to share it here. Kristi and her family have been wonderful in supporting us during this time with Scott and we are so grateful and thankful for them.

We know that there is no such thing as too much prayer. So, please be lifting this precious boy, Kaleb and his family up to the Lord.

Prayer Request for Kaleb
Kaleb had his appointment today and they said he has a staph infection around his gtube/button. We are culturing it to see if we need to change the medicine they started him on orally tonight (Bactrim). There is also a pus pustule under the skin which is causing hardness of the tissue and pain for Kaleb. We are applying a topical ointment that is an antibiotic 4 times a day as well as the oral antibiotic. Please pray that his body responds to both of these medications and his pain and infection go away. If he does not respond we might have to go to IV's sometime in the near future. Please pray for the following things:
-That the pain goes away very fast-That the infection does not spread to surrounding tissue, deeper into his tissue or into his bloodstream
-That he responds to the oral antibiotics so we do not need IV's
-That he does not lose weight as we cannot use the button for feeding right now because we have to stabilize it to reduce movement and friction
-That his lung culture comes back clean-That the wound culture shows he is on the right antibiotics-Dr. Carey and his wisdom in treating Kaleb
-For Dr. Carey to find another doctor in the near future that will join his practice with the same values and treatment style to lighten Dr. Carey's load!I am leaving tomorrow until Saturday for my last volleyball trip for this season.
Please pray nothing goes on while I am gone with Kaleb and for Dave while I am gone. He is the best Daddy and husband ever!! I will let you know when we know anything and how our Tri State tournament goes this weekend!!Thanks for your prayers and support, we couldn't do it without all of you!
Trusting God is in control....

Because Every Princess Needs Sparkly Shoes

2008-10-15T15:50:00.000-07:00

I have focused so much on Scott on my blog posts that I felt it was time to introduce you all to our resident Princess, Ashlyn.

Her daddy calls her his princess and she has taken it to heart! Tuesday at an event at church Ashlyn was playing with a group of kids and she announced to them all, with her hands on her hips and sass in her voice, “I am a Princess!” After the event and lunch with a friend, we went to Target (one of our favorite places) to pick up toothpaste, how mundane! Anyway, we walked by the shoe department and what did we see? Sparkly Shoes!!!

As any Princess knows you need sparkly shoes! So mom said, “Yes” and we now have a beautiful pair of silver sparkly shoes. They are pretty cool; almost wish they had them in my size. Well, almost!

Here are a few other tidbits from the last few days! Scott did so well at the Puberty Stimulation tests; he had an IV inserted both days and went through several blood draws and injections. The doctor’s nurse, Jack (we really like Jack – he is further proof of how good God is! Jack is a fellow believer and has been uplifting Scott in his prayers) was very good with Scott and keeping him informed about what he was doing and what was going on. By the end of the second day Scott was so comfortable with Jack that he was joking with him and teasing him. We are still waiting for the results regarding whether or not Scott is entering puberty. But, to his mom it sure seems like he is, pubic hair, a few pimples and some body odor and surliness, sure sounds like puberty to me. I just keep praying that it isn’t.

I think that we are done with tests and doctor’s visits for a while, maybe until we go to Maryland. Please keep us in your prayers, we still need them!

If we can be praying for any of you, please leave a comment and let us know. It would be an honor to take any request to the Throne!

Good News!

2008-09-29T21:33:00.000-07:00

This past Friday Scott took the field of vision test and his eyes where dilated so they could be photographed. It was pretty cool, seeing what the eye looks like from the "inside out".

Praise the Lord, there is no damage to the optic nerve from the tumor or the bone lesions that he has in his skull! What another answer to prayer.

Today, we went to the pediatric urologist regarding the cysts on his testicles and the doctor said that there is no cause for concern. Apparently, it is very common for boys with MAS to experience these cysts. We will do another ultrasound in a few months to make sure they haven't changed in size. Another answer to prayer! I am continually amazed at how good God is!

I just wanted to give you all a quick update and ask that you continue to uphold Scott in your prayers. We still need them.

Also, I wanted to report a praise to you all. I am sleeping better! What a blessing that is! Everything seems so much more "doable" when you get a fairly good nights sleep.

Thanks again, you wonderful prayer warriors! We couldn't do this without you.

Treasured

2008-09-23T16:25:00.000-07:00

My women’s Bible study group, Treasured, started back up to day. I have a group of eight ladies, a few I knew from last year and the rest are new to Treasured. It was a great morning. I love being able to sit around a table of ladies that are all in the same season of life. We can understand each other when we talk about mountains of laundry or not being able to fit time into take a shower or being able to help a new mom with the struggles of first time motherhood. What a blessing to be able to share in their lives and to love on the little babies!

At home, things are relatively quiet, which is a nice break. We do have a doctors appointment on Friday, the Neuropthalmologist, for the field of vision test. Please be praying that Scott’s vision is unaffected by the tumor.

Have a great week!

Into the Swing of Things

2008-09-17T17:51:00.001-07:00

It seems like we are back in the swing of things here! School, Bible studies, small group, and a new part of the routine, doctor’s appointments and tests! I will have to admit that I have really been having a hard time with all the calls, scheduling, rescheduling and referrals. I suppose it is all our new “normal”! I know that God is in control, but I wish that we didn’t have to go through this. However, I will say that my faith has been stretched and strengthened and I am in AWE of how God works. The way He has used people we have been close to for years and people we haven’t even met is just a JOY to behold.

It says in the book of James in the Bible: My brethren, count it all joy when you fall into various trials, knowing that the testing of your faith produces patience. But let patience have its perfect work, that you may be perfect and complete, lacking nothing. James 1:2-4

What a strange thing to say, at least in my mind, to look at something that causes so much heartache and grief, the trial of a child with a serious disease, as a joy!!! But, I can say that I have felt joy in the midst of this and have been able to share with others why I am feeling the calm that I am. Would I rather not be going down this path? Absolutely! But, I have learned so much about faith and the perfect strength of God and how to rest in that and know that He is in control and whatever he has planned for my baby boy is going to be great! The patience thing, I’m still working on that…

Scott had another test today. An Auditory Evoked Potential test. I didn’t know that this was being planned, so I was a little shocked when they called to schedule the appointment. The doctor requesting the test is Scott’s geneticist, which kind of surprised me, since he had already had a hearing test and every thing was good. This test, as explained to me, is to check the nerves for the ear/hearing. Sorry, I can’t be any more technical than that. I had been told that it was a 90 minute test and we needed to bring him in sleep deprived. So we kept him up late last night and let him read in bed after we had gone to bed. Then we all got up before the crack of dawn to go to breakfast before the test, which was at 7:30 a.m. Most of us in this family aren’t “morning” people. Only Scott wakes up with a smile and a cheery disposition, so getting everybody out the door by 6:00 a.m. was an accomplishment!

Chuck took the day off to be there with Scott, as I had to work this morning and we where expecting to be there a long time. As it turns out, by 8:10 they were done! Chuck was told that it was a “good” test. Not exactly sure what that means, but sounds positive. We’ll have to wait for a doctor to review the results before we can get a report from the test.

Scott is now scheduled for the puberty stimulation test on October 6 & 7. It is a two day process and requires several blood draws. They are also going to do a glucose test on the second day of the test.

Here’s the latest prayer requests:

That we would continue to get referrals and appointments in a timely fashion and
that they would be to the right doctors.

For Scott during the puberty stimulation test (the one questions he always asks when we are going to tests is, “will I have to have a shot”?

Continued strength and wisdom of Chuck and I

Thanks for your prayers! They are sustaining us.

I Love Dogs!

2008-09-15T16:05:00.000-07:00

As many of you know, I LOVE dogs. If I could, I would have 45 of them. Well, OK, maybe not that many. We have had three dogs during our marriage, Annie, Madison, and Kira. Annie and Madison have gone on to “doggy heaven” and we miss them both.

Our current dog is Kira. She’s a Rhodesian Ridgeback that we rescued/adopted last September. In fact, she came home on September 21st, so she’s been a part of our family for a year! She is truly my dog. She follows me around the house and wants to sleep with me, curled up right next to me. If I am on the sofa she tries to squeeze in beside me and whoever is sitting next to me! She thinks she’s a lap dog.

I find Chuck, who says “she’s OK”, snuggling up with her, when he thinks I am not looking! She is great with the kids, who lay on her and crawl all over her.

She has been a great comfort to me since we have been going down this path with Scott. She will snuggle up to me and I can unburden my heart to her and cry on her shoulder, (literally, she is 80+ pounds).

Here are some pictures of our “fur kids”. Kira is the beautiful golden girl. Madison is the Doberman mix I’m snuggled up with and Annie is the one with the McDonald’s bag on her head (she was the most food driven dog I have ever seen)!

I am thankful that God created dogs!

One More Thing

2008-09-11T17:01:00.001-07:00

I spoke with Scott's endocrinologist, Dr. Naidu today and there are several cysts on his testicles, one of the cysts is fairly large. She said she didn't know if that was indicative of MAS in boys or not, so she is referring us to a pediatric urologist. She didn’t want to order a CAT scan because of the radiation on the testicles; the urologist might want to biopsy the cysts. She didn’t know.

The puberty stimulation test is tentatively scheduled for Wednesday. It is my understanding that will determine whether or not his is in early puberty.

So please add this newest development to your list of prayer requests regarding Scott.

Maryland Here We Come

2008-09-08T20:19:00.001-07:00

We found out that the dates in October will not work. So we are now scheduled to go to Maryland Nov. 15 - 22. I was hoping that we wouldn't have to wait so long, but it actually works out very well for that week. Scott has early release from school for that week, due to parent teacher conferences, so it will be a little less school that he'll miss. My sister, who will be watching Ashlyn will be home from a mission trip to Bolivia by then and will have an easier time of getting out here. So are flights are booked!

Scott has had a good first few days of second grade. He likes his teacher and has several kids from first grade in his class. So that's good. I have started back a a leader at our church in Treasured, which is a ministry to mom's with preschool aged children. We had our first training this past Monday and the program begins on Sept. 23. I am looking forward to getting back in a routine and continue on with "normal" life.

Scott still has to have a couple of tests and his endocrinologist, Dr. Naidu left a message today and said that she has gotten the results of the testicular ultrasound and, "doesn't know what to make of it." So I'll be calling her back and seeing what the next steps are. Keep praying, praying, praying!

Also, please keep praying for me, that I will start sleeping better. I am only getting about 3 hours a night and I am dragging.

Thanks!

Wow, Wow & WOW

2008-09-06T19:08:00.000-07:00

We got a call yesterday from a research nurse, Marilyn, from the National Institute of Health (NIH) in Bethesda, MD. We are tentatively scheduled to go October 18th-26th. She wants to double check with Dr. Collins about that week, but we should know by Tuesday. If not that week it will be sometime in November.

I am still amazed by how God works things out! In thinking about going out to Maryland I was looking for hotels near NIH and was coming up with room rates that were astronomical! Being very near Washington D.C., I wasn't all that surprised. NIH offers a place called the Children's Inn right across the road from the research hospital where Scott will stay and there is no charge to family members who stay at the Inn. They also provide a small stipend each day for food.

Marilyn said that one parent will need to stay with Scott, sleeping on a sofa bed in the room. Chuck and I will switch off who stays with Scott. The subway system, The Metro, has a stop right at NIH and we can use it if we have any free time to visit the local attractions. Chuck's mom & dad have very generously offered to cover the airfare expense for us to travel and we have a wonderful friend to is arranging air miles to be donated for future trips!

WOW! I keep thinking of the verses in Jeremiah 29:11-13 "For I know the plans that I have for you, declares the Lord, plans for welfare and not for calamity to give you future and a hope. Then you will call on upon Me and come and pray to Me, and I will listen to you. And you will seek Me and find Me with all your heart."

It is so hard for me to wrap my mind around the fact that God new what was going to happen with Scott even before He made the world and that He truly cares for and loves Scott (and us) more than we could ever imagine. I have to say that I have had such calmness through this that can only come from God; I am normally such a "Master Worrier!" People we know have been passing on our prayer requests to people they know and we are hearing that there are people in the UK, Japan, Mexico and all over the U.S. praying! How cool is that! I must say that I can feel all of them!

Please keep praying! Here are the newest requests:

That we would go to Maryland at the right time.
Continued wisdom and clarity for Scott's doctors.
Referrals would come through quickly (We saw the neurophthalmologist on Friday and the test that he really needed to do wasn't approved in the original referral, so they had to submit another one. However, based on what he could do, he thought everything looked good. Scott's vision isn't being effected by the tumor, yet).
That the tumor would not grow anymore or better yet that God would miraculously heal him!
That Scott would remain satisfied with the explaination of "we need to find out why you are so big" as to why all the tests and doctors visits and/or the wisdom of what to say if he starts needing more information.
I haven't been sleeping well, pray for good sleep. Please!

I'll leave with another verse: And He said to me, "My grace is sufficient for you, for power is perfected in weakness." II Corinthians 12:9

Thank you all for your prayers!

I Have Been a Negligent Auntie!

2008-09-05T09:20:00.000-07:00

Over the last month or so my world has been pretty focused on Scott and what's going on here, obviously.

But, we have had some WONDERFUL things happening in our family! Namely a new niece! Her name is Jessica Natalie Green. She was born on August 1st and she's BEAUTIFUL.

Please keep her and her mommy & daddy, Steve and Natasha in your prayers as well!

Getting Ready for the Big Day

2008-09-03T17:52:00.000-07:00

Tomorrow is the first day of school. Scott is a Second Grader! I gathered up his supplies and sharpened pencils today. I must admit that I am both looking forward and dreading school. I am not a morning person, so getting up and trying to get both kids dressed and out the door is a challenge for me! On the other hand, I am very glad that school is back, Scott and his sister have been on each others nerves and because of that, on mine! So bring on school, just make sure that the coffee pot is set up and ready to go the night before!

I did meet with his teacher, Mrs. Mitchell, to talk to her about what is going on and what may be coming up. She seemed very nice, concerned about Scott and willing to work with us, as far as missing school, doctor's appointments, etc...

He also had an ultrasound on his scrotum (can you say that in a blog?), his doctor is trying to determine if he is going into early puberty or not and that test was a part of that. I was afraid that he'd be embarrassed or upset at having to do that, but by God's grace, he fell asleep! We should find out in few days what the results are.

I'll update my blog after our appointment with the neurothalmologist on Friday. Keep on praying! Those prayers are working!

Summer of Discovery

2008-09-01T21:18:00.000-07:00

We have discovered much this summer, some things that we wish we never would have. But, we'll do our best with those, trust God, and move forward.

Perhaps the other discoveries will have more of an impact on our daily lives, who knows? Who discovered what and what are they, you ask? Scott has found two new "loves" this summer. Video games and mom's MP3 player.

We had been given a hand me down PlayStation a while back and I had avoided setting it up (trying to keep video games away as long as possible). Well, Scott finally asked about it and his dad set it up. Scott loves anything that races and crashes and one of the games that came with the PlayStation is a racing game. Now one of the first things that I hear in the morning is, "can I play video games?" Both of my "boys" have spent a fair amount of time racing. I guess that's O.K! Right?

I have an MP3 player that is loaded with my very eclectic taste in music and one day we were playing the MP3 through the car stereo system and Scott heard the song "Godzilla" by Blue Oyster Cult. (Which is a song from my youth, ah remember when...) Anyway, he heard the song and thought it was funny, which it is, and then the next day he asked if he could hear it, which he did, probably 219 times in a row (that may be an exaggeration). Scott is now asking if they make MP3 players for kids. Who'd have figured!

This week coming up is a big one. School starts on Thursday. We are planning on meeting with Scott's teacher before school starts to give her a "heads up" as to what is happening and what may be coming up this year. He already has a doctor's appointment the second day of school. We see the neuropthalmologist to check on his vision to see if the tumor is effecting it at all. We also have the very routine dentist appointments, which have been scheduled for months and didn't want to try an reschedule. Nothing like a "doctor-a-day" approach.

We sent copies of Scott's test and records to the Dr. in Bethesda and he should have those on Tuesday. So hopefully we'll have a better idea as to when we will be going back there by the end of the week.

Prayer Requests:

That the neuropthalmologist would be given wisdom and clarity as he examines Scott

Wisdom and clarity for Dr. Collins (Bethesda, MD)

Scott's first couple of days at school and that his teacher would be "extra special" (like Miss Davis, Awesome 1st Grade Teacher)

Thank you all for your prayers! You a all such a blessing in our lives.

How I have been Inspired

2008-08-29T10:33:00.000-07:00

First of all I have been inspired by all of you! Your prayers, support, encouragement and lasagna have amazed me! I truly thank God for each and every one of you.

I have always been a fan of Steven Curtis Chapman. His heart is evident in his music and how much he loves the Lord. His latest CD is called "This Moment". I was inspired by this CD in wonderful ways prior to the current circumstances, but now the music touches me in a deeper way. You may know that Steven’s youngest daughter was killed in an accident earlier this year; she was struck by an SUV driven by his teenage son. While we are not facing the death of a child, I am in awe of his strength and hope in his grief. I have included the lyrics from one song in particular from the CD (I tried to include an audio file, but couldn’t figure out how, maybe you can’t). But, at any rate please read the lyrics, the last verse was added by Steven after his daughter’s death.

Yours by Steven Curtis Chapman

I walk the streets of London
And notice the faces passing by
Something that makes me stop and listen
My heat grows heavy with the cry
Where is the hope for London?
You whisper and my heart begins to soar
As I’m reminded every street in London is Yours

I walk the dirt roads of Uganda
I see the scars that war has left behind
Hope like the sun is fading
And they’re waiting for a cure no one can find
And I hear children’s voices singing
Of a God who heals and rescues and restores
And I’m reminded that every child in Africa is Yours

And it’s all Yours God, Yours God,
Everything is Yours
From the stars in the sky to the depths of the ocean floor
And it’s all Yours God, Yours God, everything is Yours
You’re the maker and keeper,
Father and ruler of everything

And I walk the sidewalks of Nashville
Like Singapore, Manila, and Shanghai
I’m brushed by the beggar’s hand and the wealthy man
And everywhere I look I realize that just like the streets of London
For every man and woman, boy and girl
All of creation, this is our Father’s world

I walked the valley of death's shadow
So deep and dark that I could barley breathe
I’ve had to let go of more than I could bear
And I’ve questioned everything that I believe
Still even here in this great darkness
A comfort and a hope come breaking through
As I can say in life or in death
God, we belong to You

We are Yours, God
The glory is Yours, God
All the honor is Yours, God
The power is Yours, God
The glory is Yours, God
You’re the King of Kings and Lord of Lords
And It’s all Yours God, Yours God
Everything is Yours
All the greatness and power and glory and splendor and majesty
Everything is Yours
It’s all Yours
We are Yours
The glory and honor is Yours
Everything is Yours
It’s all Yours

The reason I wanted to include this was to say that We Are All His and how wonderful that we have Him to lean on and take our hope from. He knows what will happen with Scott and He loves him even more than I can imagine. I pray that this song touches you as it has done me and know how much God loves you!

Please keep us in your prayers!

God is so Good!

2008-08-26T17:05:00.000-07:00

Wow! What an amazing 24 hours it has been. One of the wonderful people who have received our emails is Chuck’s cousin, Kristi, who has been such a support and an encouragement to us. Kristi and her family are running a marathon of their own. Her son, Kaleb, has Cystic Fibrosis. They have been running their marathon for seven years.

Kristi has been posting our prayer requests and updates on her blog and a lady whose son has MAS happened to come across Kristi’s blog. She sent information to Kristi about a Doctor in Maryland who is an expert on MAS and sent a copy of a paper that he has written. We took that to our doctor and she encouraged us to contact him. I sent an email on Friday and on Monday night I checked our email and there was a note from him. He would like to see/treat Scott at the National Institute of Health in Bethesda, Maryland. And, unbelievably, there would be no charge for his care at NIH.

This gives me chills and leaves me in awe at how MARVELOUS our God is! Kristi didn’t just happen to keep her blog updated with our prayers. The lady who son has MAS and had information about a doctor that has expertise in this rare disease really didn’t just happen to find Kristi’s blog. I am overwhelmed by the way that God has placed people in our lives and directed us to the most wonderful people. It gives me great comfort in resting in Him for what may be coming down the road.

We contacted Scott’s doctor, who had also emailed and received a response from Dr. Collins, to find out what her thoughts were and she said she would “highly recommend” that we get involved with Dr. Collins.

Please pray that working with Dr. Collins is the right direction that we need to be heading in. If not, pray that would be made clear to us.

Thank you all you prayer warriors! You have been amazing and such a blessing. I thank God for each and every one of you.

Monday has been a Good Day!

2008-08-25T16:22:00.000-07:00

I have actually been able to get some work down around the house and even some laundry! Wow. Who’d of thought that I would be excited about something so mundane…?

So far, this week we only have two doctor’s appointments and some labs we are waiting on referrals for, an ENT tomorrow and the oncologist on Wednesday. The ENT is checking Scott’s hearing as Dr. Naidu was concerned about the tumor affecting it. The oncologist for the tumor to see if it can be handled medically, I assume with radiation. Boy, that is a word that freaks me out, well wait, maybe tumor freaks me out more.

One of the things that I have been so thankful for has been my family and my “chosen” family. Our dear friends, Darrel and Barbie are such a blessing in our lives. They have been so involved in our lives, I can’t imagine going through this with out them. Since I have lost both of my parents, they have become like my mom & dad and thus become grand parents for Scott and Ashlyn.

Darrel took the kids on Saturday night to the speedway at the OC fair grounds, they had a blast! Chuck and I were able to have a quite evening at home, what a blessing!

Thank you all for your prayers, support and love. We need each and everyone of you.

Much Love!!!

It's a marathon, not a sprint

2008-08-23T08:23:00.000-07:00

I love to watch the Olympics, even though I am one of the most un-athletic people around. I admire the dedication and strength that the Olympians have and thinking about this journey that we are on now makes me realize that we are running in a marathon of a lifetime. Not just ours, but one for Scott as well.

One of the things that I have been thinking about is how do you balance having a “special needs” child with everyday life. We have had so many doctors appointment and lab test, etc… it has been all consuming. I am behind on laundry, grocery shopping, house keeping, you name it… I suppose that when we get past the initial appointments and such things will settle down some. Maybe?

But, I have been inspired by the people who have been so supportive and the prayers that are offered up for us. It is amazing!

Here is a copy of Chuck’s latest email which includes details from the last week. It is lengthy and feel free to skip down to the Praises & Prayer requests if you don’t want the details.

Hi Everyone,

A week has passed since my last email, and although Dian is keeping her blog updated, I thought I’d send out an email with updates since my last email on 8/15.

First off, thank you for your continuing prayers on Scott’s and our family’s behalf. We definitely need them and feel them. Please keep praying for us.

This next section is long. It explains what we did and what we learned this week. If you want to skip it and go down to the praises and prayer requests at the end, please feel free to.

Since last Friday, we have:
· Had a Thyroid Uptake Test done on Tue and Wed (Scott had to take a “nuclear” pill and then they took pictures of his thyroid later that day and the next day).
· The results showed that his Thyroid is enlarged, which our endocrinologist had already determined. Nodules are present (which are apparently what is making the Thyroid larger than normal), but the functioning of the Thyroid is normal. The endocrinologist didn’t seem concerned about the nodules, so we didn’t pursue that at this time (there’s only so much we can absorb at one time).
· Met with a Geneticist on Wed.
· She explained that the cause of McCune-Albright Syndrome (MAS) is a genetic defect, but it is not inherited from the parent(s) nor is it passed on to children by someone who has MAS (we had already read this via info on the Internet, but it was a nice confirmation).
· Something happens early in the development of the embryo with some of the cells. As the cells replicate themselves in preparation for division as the embryo develops, sometimes a mutation occurs and the new cell doesn’t get all of the info from the cell it divided from. Thus, it doesn’t work quite right. This can happen with many cells. Please forgive my 1st grade explanation of this, it’s the best I can do. Depending on how early in the embryo’s development this happens, just a few cells may be affected, or many cells can be affected. This apparently has an impact on how severe or extensive the symptoms are. Ok, that’s the end of the science lesson. Hope it made sense.
· There is currently no way to cure this condition. Some (maybe all) of the symptoms may be able to be treated, but it will not change the root condition.
· Had a Bone Scan done on Wed.
· This was probably the most discouraging point in our week. This scan “looked” for evidence of bone lesions throughout his body. We already know Scott has these in his skull. We were hoping they would be limited to just this area of his body. Unfortunately, he also has them in his femur (upper leg) and tibia (lower leg) bones, plus 3 lumbar vertebrae. None of them are as severe as the ones in his skull. The ones in his femur and tibia are moderate, the ones in his vertebrae are minor.
· Bone Lesions (the Orthopedist today called them fibrous dysplasia, in case that means anything to any of you) cause the bone to be less dense inside (like a hole inside the bone) and cause them to be too thin in places, making them weak and subject to easy fracture. Micro fractures can occur in these cases, which are very painful. Deformation of the bone is also common (they can bulge out, as in the case of Scott’s skull, or they can become longer than they should, as in the case of leg or arm bones). I’m sure there’s a lot more to it than this, but this is the extent of my understanding at this time.
· Met with our Endocrinologist on Thur.
· The results of the lab tests are somewhat inconclusive. There is clearly a lot of growth hormone in his system, probably from the tumor near his pituitary gland. We don’t know yet if the tumor is creating the growth hormone or only stimulating the pituitary to produce too much of it. His sex hormones are low, indicating he is not in early puberty. However, he is exhibiting some external evidence that he is in early puberty. The endocrinologist is ordering more tests to be able to (hopefully) definitively determine if he is indeed in early puberty.
· She (our endocrinologist) suggested that he may just have a so much growth hormone in his body that everything is growing big (like his Thyroid), but is not actually putting him into early puberty. We learned that the body’s glands work together, or are interrelated in that when one gland produces certain hormones, it causes other glands to produce other hormones, which causes other glands to produce hormones, etc. This is apparently how it works during puberty. One triggers part of the process, which triggers another part, etc. How do you like my technical explanation of this? Hope this is making sense. I’m no doctor, that’s for sure.
· She was surprised that the neurosurgeon is so “unconcerned” about his tumor. She thinks it is more urgent than he does. He is currently out of the country, so she will talk to him when he returns.
· Met with an Orthopedic specialist today.
· The purpose of this appointment was to get the doctor’s opinion on Scott’s bone lesions and where to go from here.
· The good news with this doctor is that he has had MAS patients before, so he is very familiar with this. The bad news is that he seemed kind of ho-hum about Scott’s condition, as if it was no big deal. Perhaps, in his experience, this is appropriate, but as his parents, Scott’s condition is a very big deal to us.
· There is no miracle cure here. One treatment that the geneticist had suggested, and our endocrinologist had agreed would be worth looking into, which has been shown to help with the weakening of the bones, is now being found to have only a short term benefit of a few years, then the condition of the bones actually gets worse than without the treatment. The Orthopedist told us this, so his experience will obviously be a plus for us. He simply suggested calcium and vitamin D supplements (the vitamin D helps the body absorb the calcium. Did you know that the fat in milk and milk products actually absorbs the calcium, so it doesn’t get into the body? We didn’t, but we do now).
· The orthopedist took xrays of Scott’s lower torso to get a better idea of how the bone lesions are affecting Scott’s legs. One leg is just over a centimeter longer than the other. A centimeter or less is considered normal, so the orthopedist isn’t too concerned about his now. The xrays showed that the bones are not currently experiencing any deformation, so that’s a good thing. Since Scott is not currently experiencing any pain, the doctor said there is no reason to limit his activities at this time.
· One of the tests we had done earlier was a bone age xray (they take an xray of the hand and somehow can determine how old the bones are from that). That test determined that Scott’s bone age is 8 (he just turned 7 the end of June). Since his body size is that of a 12 year old, that’s actually a good thing. It is one more piece of evidence that he may not be in early puberty. This would be good because children grow approximately a couple of inches or so a year until puberty, then have a big growth spurt, and then stop growing after that. If puberty happens too early, all those years of growth are lost, making the child shorter than he or she would have been if they had started puberty at the right time. The orthopedist did a bone age xray also, and he said Scott’s bone age looks to him as 7 years, which is even better news.
· The orthopedist wants to see Scott again in 6 months, unless we begin having problems.

What’s Coming Up:

· An appointment with an Oncologist on Wed 8/27 (to see if they have any new treatments that would prove effective in shrinking and/or eliminating the tumor in Scott’s brain).
· More lab tests to get a better idea on Scott’s puberty situation.
· A hearing test, to see if his hearing is being impaired at all.
· An appointment with a Neuro Ophthalmologist (due to the tumor being against his optic nerve).

Praises:

· Your prayers. We are doing much better emotionally and relationally with each other than we would be without them.
· Scott still doesn’t exhibit any difficulties. He has no pain, and he appears to still be seeing and hearing fine.
· Dian. She has been a rock. She is being a great advocate for Scott, and is keeping records of all our appointments and what we’re finding out and what we have to do. She’s also looking on the Internet for any info/help she can find.
· You all. One of our cousins forwarded us some info regarding a doctor back east who is supposedly an expert in MAS. Dian copied the article and gave it to our endocrinologist. She had not come across this info before and was very happy to get it. She will contact this doctor (she suggested we might need to go back east for treatment, if that is where the best treatment is available). One of our very dear friends loaned us a scripture verse framed in a nice frame, so we can see it regularly every day. It is Deu. 32.4: “He is the Rock, his works are perfect, and all his ways are just. A faithful God who does no wrong. Upright and just is He.” Reading this really helps me keep things in perspective. If God is in control, which is He is, and if He knew about this all along and determined when we would find out about this condition, which He did, and if He truly does no wrong, which He does not, then I am compelled to completely trust Him even though this situation makes little sense to me. It’s definitely not often easy to do, but it does help.
· Our endocrinologist is obviously very interested in providing Scott with the best care possible. She is leaving no stone unturned and we are glad to have her as our doctor.

Prayer Requests:

· Please continue to pray for us, especially for Dian. She is a rock, but she is under a lot of stress (obviously). Please pray that she will be encouraged, will not be discouraged, will get enough sleep.
· Please pray that we will both have patience with our children. Ashlyn is acting out a little, probably because she senses the extra attention we’re giving Scott right now.
· Please pray that Scott will continue to suffer no symptoms.
· Please pray that the doctors will personally care about Scott and be extra motivated to help him. Please pray that they will coordinate with each other effectively in determining a course of action for Scott’s treatment.

Again, thanks so much for your prayers. Please don’t stop.

…and One Step Back

2008-08-21T19:18:00.000-07:00

At least that’s how it feels to me, today. Scott had a bone scan on Wednesday and I had the report faxed to me. I made the mistake of reading it… He does have bone lesions in the lumbar vertebrae (which are mild), femur and tibia (which are more serious). I was hoping and praying that the only lesions that he would have would be in his head. I am still not totally clear on what that means for him, long term. We have an appointment tomorrow with an orthopedic surgeon and will have more information then.

Today, we met with Scott’s endocrinologist, Dr. Naidu. She’s a very nice doctor and seems very genuinely concerned for Scott. She said she has only seen 3 cases of MAS in her career so far and they were all girls. Apparently, it is more common in girls, but it is a very rare syndrome and not much is known about it. So, she said that she is going to have to seek information/assistance from others with experience with MAS. I was glad that she was forthright and told us that.

We had been sent an email from a lady whose son has MAS and she directed us to a doctor in Maryland and sent a copy of an article that he had written. We gave the article to Dr. Naidu and she said that she will contact him and that we should do so as well. She has ordered several more tests for Scott and we still have more appointments scheduled for the next couple of weeks. So we are still waiting on lots of information and then will try and decide what will be our next steps.

Please keep praying for:
Miraculous recovery
The right doctors, test & treatments for Scott and that the information that they get is correct.
Safety for Scott
Comfort of all of us
Strength and wisdom for Chuck and I

Thank you again for your prayers! We are truly feeling them!

One More Step

2008-08-19T19:23:00.000-07:00

Today Scott had the first of two tests involving his thyroid. Tomorrow he'll have the second part and a nuclear bone scan. Also, today we went to a Geneticist. We learned a little more information and got some more answers about McCune Albright Syndrome (MAS). We also learned that MAS is not inherited but a gene mutation and that we shouldn’t worry that Ashlyn might have the same syndrome. Praise God!

We have a couple more doctors’ appointments this week. One with our endocrinologist, which after this visit I expect we'll have a lot more answers and hopefully a plan. On Friday we go to an orthopedic surgeon and review the bone scan to see if Scott has any lesions on the bones in his body.

We are still waiting on the referral to the neuro ophthalmologist and a call back for an appointment to see the oncologist.

Scott has been such a trooper and has been very good with all these tests and appointment.

Please keep praying that we get directed to the right doctors and that everything continues to move forward.

The Power of Prayer is Amazing

2008-08-18T16:22:00.000-07:00

I have always known that the power of prayer is an amazing thing. But, I have to say that over the last couple of weeks I have FELT the power of prayer.

When we had our first appointment with the endocrinologist I so sure that they doctor would say “it’s nothing, he’s just a big boy”. Well, the landscape of our lives changed dramatically in one afternoon. The next week I was a wreck, on the verge of tears all the time and feeling a lot lost. We asked a few friends for prayer and still in our denial thought that it would be all right.

Then came the day that Scott had his MRI and the doctor called to say he had a tumor. Boy, we were really a couple of wrecks. But, we made a huge plea for prayer and boy was it answered! I can’t believe the number of emails and calls that we received! It was an overwhelming, in a good way.

I have felt a strength and peace over the last few days. I am positive that I wouldn’t be feeling if it wasn’t for the prayers that have been taken to the Throne on our behalf.

Thank you, Thank you, and Thank you. And please keep it up!

A Fun Family Day!

2008-08-16T16:50:00.000-07:00

This past Friday, we didn't have any doctor’s appointments for Scott. Only for Chuck and I! He had a chiropractor visit and I had my yearly mammogram (what a joy that is)! Anyway, with an almost free day we decided to have some family fun!

We went to the Discovery Science Center in Santa Ana. The kids had been there but not Chuck or I, it was fun!

From there we went to Downtown Disney and ate that the Rainforest Café. Then on to the Lego store. Both of the kids got some Legos and we spent the rest of the evening at home building Legos!

It was a good day as a family and we all really enjoyed!

A copy of Chuck's email

2008-08-16T16:49:00.000-07:00

Here is a copy of the email that Chuck sent out on Friday.

Hi All,

Until now, Dian and I have been sending separate emails to different groups of people (I have my own email address, she has her own one, and we have a joint one). To make things simpler for everyone, from now on we will just be sending to one big distribution list, and we will be using our joint email address.

Thank you so much to all of you for your prayers and support! Words are not enough to express our appreciation. We are truly feeling your prayers. This has been a difficult and extremely emotional week for us and we know your prayers have really helped us deal with it all.

Here are the highlights (I was going to cover all of it in as much detail as I understand, but I finally decided that not many of you, if any, would want to wade through a mile-long email. If any of you would like more details about any of this, we’ll be happy to give you as much as we know/understand):

· Scott does have McCune-Albright Syndrome.
· This syndrome can cause many problems in different parts of the body.
· Scott has:
· A benign tumor on his pituitary gland.
· An enlarged Thyroid gland.
· Bone lesions on his skull (which cause deformities in appearance and can affect the facial nerves). He might have them elsewhere on his body. A full-body nuclear scan will be done next week to find out.
· Early puberty.
· His large size is being caused by this condition (possibly the tumor on his pituitary).
· While the tumor is not cancerous, it is still serious. Left untreated, it could cause blindness and/or deafness, and his dramatic growth rate would probably continue, leading to gigantism, which would likely severely reduce his life expectancy.
· The tumor is slow growing, so this is not an emergency situation where they have to operate tomorrow. We have enough time for him to be thoroughly examined so the doctors will know exactly how this condition is impacting him and a plan for helping him can be made.
· There is currently no cure for this condition, but there is at least one treatment for it in Europe, and clinical trials are being conducted here in the States, so one of these might prove helpful for Scott.
· While the tumor and skull lesions could probably be treated surgically, the neurosurgeon would prefer a non-surgical approach. He is referring us to an Oncologist to see if they have any new treatments that might work for Scott.
· We still have many tests and consultations to go.

Praises
Scott is not going to die from this, at least not in the short or mid-term. His life expectancy could be shortened by this condition, but we aren’t going to lose our precious guy to this in the next week, month, or year. When we first heard “tumor in his brain” from the doctor, we of course feared the worst.
In my 1st email, I mentioned being angry with God. In the last few days, that anger has pretty much disappeared, even before we learned the tumor wasn’t going to kill him. I can only attribute this to your prayers and God’s work in my heart. I still don’t understand why, but at least I’m no longer mad at God.
We have been getting generally quick responses on getting the referrals and getting appointments.
We are able to see that God is in control. We still don’t know where this is going or exactly how this will end up, but we are trusting Him for the outcome.

Prayer Requests
· Although we have been getting the referrals quickly, they haven’t always been to the right type of specialist, so we’ve been having to re-do them. Please pray that God will bring just the right people to us to help Scott.
· Please pray that God would give those people wisdom in determining a course of action for Scott and that they will all get along well and be able to work together so that Scott receives the best possible treatment.
· We have a Thyroid and body scan scheduled for next week, along with another consultation with our endocrinologist. We still need to get a referral for a geneticist. Pray that the tests fully reveal what needs to be seen and that Scott handles them well.
· Please pray that we don’t get stuck in red tape. We are with an HMO, and so far haven’t run into any problems, but I do know that is a real possibility.
· The tumor does need to be treated. Please pray that there is some kind of “pill” that Scott can take that can treat this medically (both get rid of the tumor and the bone lesions). If surgery is needed, his pituitary might have to be removed if the tumor is entwined around/within it, which would require hormone replacements which will have side effects. And although the bone lesions could also be treated surgically (his skull would be removed and the bone shaved somehow to reduce the thickness), this is not an easy or desirable procedure, and might have to be repeated later at some time in the future.
· Please pray that his growth can be regulated so he won’t become a “giant”, which would reduce his life expectancy.
· Please pray that Scott will be able to handle all the tests and the eventual treatment(s).
· Please pray that we will continue to trust God completely throughout all of this (we have gone from the “immediate crisis that will be resolved one way or another soon” concept to the “this isn’t life-and-death right now, but Scott’s and our lives have been altered for the rest of our lives” idea).

Thank you for taking the time to read this long email (I really did try to keep it short) and mostly thanks for you prayers. We treasure them and will continue to need them for some time. We will continue to give you updates (hopefully much shorter than this one) as we have new information to provide.

Thank you again,

Chuck and Dian

p.s. I have set up a blog that we’ll try to update regularly, you can find it here: dianrae.blogspot.com

The Good News and the Bad News

2008-08-14T16:36:00.000-07:00

Today was another appointment in the long line of appointments that we have coming up. Today we saw the neurosurgeon. The good news is that the tumor on his pituitary gland isn't a have to surgery tomorrow kind of thing. The doctor actually said that he would rather try and handle it medically first, before trying surgery. So as a result of that he wants us to visit an oncologist to see if there would be a type of treatment for Scott. The tumor is not cancerous, benign, in that sense.

The bad news is that he has some major thickening of the bones in his skull and will likely, at some point, need to have surgery to remove the build up of bone. The build up is part of the McCune-Albright Syndrome (MAS). He might have to have this done more than once over his lifetime. We have a nuclear bone scan scheduled for Wednesday, August 20th and an appointment with an orthopedist on Friday, August 22nd. We'll find out then if he has any of these build ups on other bones in his body.

We both feel like we know a little more but still need to know a whole lot more. We have several referrals that we are waiting on still and I don’t know how many more appointments to set up. Right now my mind is spinning and I am feeling totally overwhelmed! This is something that I never imagined that I would be going through as a parent. It is unbelievable. But, here we are and I am trying to rely on the Lord and rest in His grace, moment by moment.

Please pray for these things specifically:

1. Miraculous recovery.
2. Referrals would continue to be approved by insurance company and appointments would be scheduled quickly.
3. We haven’t told Scott anything yet, just that we are trying to figure out why he is so tall. Please pray that we have the wisdom of what to tell him and when.
4. That we are directed towards the right doctors, treatments and tests.
5. Strength for the family.

Thank you all so much for you support and prayers!

Updates here

2008-08-13T15:22:00.001-07:00

I thought that it might be easier to keep everybody updated on Scott and what is going on here through a blog. I have had this account for months and never actually used it!

But, I have appreciated seeing other folks blogs to keep everyone up to date and decided to follow suit. (Thanks, Kristi!).

We really don't have any new information as yet. We have an appointment with a neurosurgeon tomorrow (Thursday, Aug. 14 at 1:00 p.m.), we are both anxious to see how that goes and what that will mean for Scott. I think that we are both assuming that he will have to have surgery soon.

We are still waiting on appointments for a nuclear bone scan , an nuero opthamologist and an orthopedic specialist.

I will include here a copy of an email that Chuck sent out this morning, as it has some good info also.

Chuck's email:

Hi All,

Thank you all for your tremendous support. Dian and I are overwhelmed by the number of you who have called or responded to my email request. Your prayers are really helping. One thing that Dian had asked people to pray for was a quick turnaround on getting referrals to the tests and specialists Scott needs to see. So far, we have had some success in that area (we managed to get an appointment with the neurosurgeon on Thursday, which was nearly a week earlier than they had originally told us they could see us, and that right now is our greatest concern), but we are also finding that we are not always getting referred to the right kind of specialists, so we’re having to get new referrals. Please pray that God would bring just the right doctors to us and that He would give them wisdom as they review Scott’s tests and what needs to be done.

We still have a neuro-opthamologist to get a referral for, a full body nuclear scan to have done, plus 2 or 3 other referrals – I can’t remember it all. Please pray also that Dian can hold up under this, the bulk of dealing with the referrals falls to her.

Our endocrinologist, who is requesting the various tests and appointments with the specialists, appears to have determined now that Scott does have McCune-Albright Syndrome. It is fairly rare condition and can have many different impacts on the body. Our greatest concern remains the tumor on/near his pituitary gland. We hope to get a better idea what the treatment options and prognosis for this is when we meet with the neurosurgeon on Thursday.

Please continue to uphold us in your prayers. Thankfully, so far Scott does not feel ill in any way, and he in fact has no idea yet that there is anything wrong with him (we’ll deal with that when we know more and what lies ahead for him).

Again, thank you, thank you, thank you for prayers and support!

I will give you another update on Thursday, when hopefully we will know more.

Gratefully,

Chuck

For those of you interested in learning more about McCune-Albright Syndrome, here is a web site that I found useful.

http://www.magicfoundation.org/www/docs/109/mccune_albright_syndrome.html

Please keep us in your prayers, you don't know how much we appreciate and feel them!