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!

Getting Ready for the Big Day

Tomorrow is the first day of school. Scott is a Second Grader! I gathered up his supplies and sharpened pencils today. I must admit that I am both looking forward and dreading school. I am not a morning person, so getting up and trying to get both kids dressed and out the door is a challenge for me! On the other hand, I am very glad that school is back, Scott and his sister have been on each others nerves and because of that, on mine! So bring on school, just make sure that the coffee pot is set up and ready to go the night before!



I did meet with his teacher, Mrs. Mitchell, to talk to her about what is going on and what may be coming up. She seemed very nice, concerned about Scott and willing to work with us, as far as missing school, doctor's appointments, etc...



He also had an ultrasound on his scrotum (can you say that in a blog?), his doctor is trying to determine if he is going into early puberty or not and that test was a part of that. I was afraid that he'd be embarrassed or upset at having to do that, but by God's grace, he fell asleep! We should find out in few days what the results are.

I'll update my blog after our appointment with the neurothalmologist on Friday. Keep on praying! Those prayers are working!

Summer of Discovery

We have discovered much this summer, some things that we wish we never would have. But, we'll do our best with those, trust God, and move forward.

Perhaps the other discoveries will have more of an impact on our daily lives, who knows? Who discovered what and what are they, you ask? Scott has found two new "loves" this summer. Video games and mom's MP3 player.

We had been given a hand me down PlayStation a while back and I had avoided setting it up (trying to keep video games away as long as possible). Well, Scott finally asked about it and his dad set it up. Scott loves anything that races and crashes and one of the games that came with the PlayStation is a racing game. Now one of the first things that I hear in the morning is, "can I play video games?" Both of my "boys" have spent a fair amount of time racing. I guess that's O.K! Right?

I have an MP3 player that is loaded with my very eclectic taste in music and one day we were playing the MP3 through the car stereo system and Scott heard the song "Godzilla" by Blue Oyster Cult. (Which is a song from my youth, ah remember when...) Anyway, he heard the song and thought it was funny, which it is, and then the next day he asked if he could hear it, which he did, probably 219 times in a row (that may be an exaggeration). Scott is now asking if they make MP3 players for kids. Who'd have figured!

This week coming up is a big one. School starts on Thursday. We are planning on meeting with Scott's teacher before school starts to give her a "heads up" as to what is happening and what may be coming up this year. He already has a doctor's appointment the second day of school. We see the neuropthalmologist to check on his vision to see if the tumor is effecting it at all. We also have the very routine dentist appointments, which have been scheduled for months and didn't want to try an reschedule. Nothing like a "doctor-a-day" approach.

We sent copies of Scott's test and records to the Dr. in Bethesda and he should have those on Tuesday. So hopefully we'll have a better idea as to when we will be going back there by the end of the week.

Prayer Requests:

That the neuropthalmologist would be given wisdom and clarity as he examines Scott

Wisdom and clarity for Dr. Collins (Bethesda, MD)

Scott's first couple of days at school and that his teacher would be "extra special" (like Miss Davis, Awesome 1st Grade Teacher)

Thank you all for your prayers! You a all such a blessing in our lives.