Prayer Request Update

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

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

Thanks prayer warriors!

Christmas Memories

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

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

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

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

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

Even Kira gets into the Christmas spirit!

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

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

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

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

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

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

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

Urgent Prayer Needed

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

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

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

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

Thanksgiving and Praise

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!

Bolivia Here They Come

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

Please join me in praying for them!

Please pray these things for them:

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

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

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

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

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

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

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

www.horizonscc.com/blog.htm

www.horizonscc.com/bolivia.htm

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

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

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

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

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

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

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

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



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

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

Tony, Rachel, Cynthia & Ashlyn

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

Thank You for Your Prayers

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

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

Our Responsibility

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

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

Letters From War

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

She started writing

You're good and you're brave
What a father that you'll be someday
Make it home make it safe

She wrote every night as she prayed

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

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

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

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

Bring him home

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

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

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

God Bless

Calling All Prayer Warriors

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

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

Prayer Request for Kaleb
Kaleb had his appointment today and they said he has a staph infection around his gtube/button. We are culturing it to see if we need to change the medicine they started him on orally tonight (Bactrim). There is also a pus pustule under the skin which is causing hardness of the tissue and pain for Kaleb. We are applying a topical ointment that is an antibiotic 4 times a day as well as the oral antibiotic. Please pray that his body responds to both of these medications and his pain and infection go away. If he does not respond we might have to go to IV's sometime in the near future. Please pray for the following things:

-That the pain goes away very fast-That the infection does not spread to surrounding tissue, deeper into his tissue or into his bloodstream

-That he responds to the oral antibiotics so we do not need IV's

-That he does not lose weight as we cannot use the button for feeding right now because we have to stabilize it to reduce movement and friction

-That his lung culture comes back clean-That the wound culture shows he is on the right antibiotics-Dr. Carey and his wisdom in treating Kaleb

-For Dr. Carey to find another doctor in the near future that will join his practice with the same values and treatment style to lighten Dr. Carey's load!I am leaving tomorrow until Saturday for my last volleyball trip for this season.

Please pray nothing goes on while I am gone with Kaleb and for Dave while I am gone. He is the best Daddy and husband ever!! I will let you know when we know anything and how our Tri State tournament goes this weekend!!Thanks for your prayers and support, we couldn't do it without all of you!

Trusting God is in control....

Because Every Princess Needs Sparkly Shoes

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

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

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


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

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

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

Good News!

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

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

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

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

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

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

Treasured

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

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

Have a great week!

Into the Swing of Things

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

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

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

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

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

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

Here’s the latest prayer requests:

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

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

Continued strength and wisdom of Chuck and I

Thanks for your prayers! They are sustaining us.

I Love Dogs!

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

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

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

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

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

I am thankful that God created dogs!

One More Thing

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

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

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

Maryland Here We Come

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

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

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

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

Thanks!

Wow, Wow & WOW

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

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

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

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

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

Please keep praying! Here are the newest requests:

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

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

Thank you all for your prayers!

I Have Been a Negligent Auntie!

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



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

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