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!
Sunday, November 15, 2009
Tuesday, October 13, 2009
It's been a long time...
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
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
Friday, June 12, 2009
Can I Just Say...
…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!
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!
Tuesday, June 2, 2009
Young and Old at the Same Time?
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!
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.
Wednesday, May 13, 2009
Update on Scott
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!
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!
Friday, May 8, 2009
My Son, the Slugger
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".
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".
Thursday, April 9, 2009
A Whole New Me...
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.
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.
Friday, March 27, 2009
Updaate on Adam
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!
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!
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!
Sunday, February 15, 2009
Boogity, Boogity, Boogity
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!
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!
Thursday, February 12, 2009
The Big Shot
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!
Thank you all!
Saturday, February 7, 2009
What's Love Got to Do With It?
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:
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.
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.
Saturday, January 17, 2009
The Power of Prayer
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.
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.
Thursday, January 15, 2009
Here we go again...
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!
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!
Thursday, January 8, 2009
The Things that Kids Say
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!
His reply, "I bounced and then I was fine."
I just love the things that come out of kids mouths!
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