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.