Thanksgiving and Praise

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

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

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

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

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...

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

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

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

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

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

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!