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.
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