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!
Friday, March 27, 2009
Monday, March 16, 2009
A Prayer Request
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!
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
Tuesday, March 3, 2009
What a Year it Was!
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!
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!
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