Monday, November 30, 2009

NOT what I expected....


Well Sam's results for the blood work are in. I fully expected to be waiting at least until wednesday. I had just come to accept that he probably had the von Willebrand's disease, and was feeling ok with it. Feeling that it would still be ok, that God was still going to care for him that He knew and would guide the doctors in treating him. Well the tests came back negative! So now essentially what we have is a bleeding problem that they don't know what it is caused by, how to treat it, or what the future holds. So now we know that there is something wrong with his blood, but don't know how to treat it. :-( So now I don't know what the next step is. I am so frustrated, and oddly enough disappointed. I finally was ok with this, and accepted that we would have some new treatment or something, but essentially we have a significant problem without an answer, which is exactly where we were last week. I don't know why I am struggling so with it tonight.
I keep reminding myself that God is with us through this. And that His plan for Sam and for all of us is perfect, that He knows best. I am holding on to Him being the one to see us through this trial. That we will continue to have really amazing doctors (DR V) that will take us down the path that will lead to Sammy being better. God knows, and He knows best! I don't know what that best is but I am trusting that EVERYTHING will be OK!!!

Christmas festivities






Every year on the sunday after thanksgiving we drive out to Littleton where a friend of mom's has for years decorated with thousands of lights for Christmas. They have a train, and a life size gingerbread house, ferris wheel, life sized nativity etc etc. Two house lots FULL. We went as kids, and it is fun to now continue the tradition with my family. The kids had a wonderful time and Sam got to bring his little girl friend Savannah whom he truly adores. They are so funny together:-)

Saturday, November 28, 2009

Thankful

Below, a song that says so much about the stuggle, but is a reminder that we need to hold on to Jesus and He will bring us through. A friend posted this to her blog and I am so thankful.... Enjoy!!!



Because the tears fall...


I've had questions, without answers
I've known sorrow, I have known pain
but there's one thing, that I'll cling to
You are faithful, Jesus You're true

when hope is lost, I'll call You Saviour
when pain surrounds, I'll call You healer
when silence falls, You'll be the song within my heart

in the lone hour of my sorrow
through the darkest night of my soul
You surround me and sustain me
my defender, forevermore

when hope is lost, I'll call You Saviour
when pain surrounds, I'll call You healer
when silence falls, You'll be the song within my heart

and I will praise You, I will praise You
when the tears fall, still I will sing to You
and I will praise You, Jesus praise You
through the suffering still I will sing

when hope is lost, I'll call You Saviour
when pain surrounds, I'll call You healer
when silence falls, You'll be the song within my heart

oh yes, You are good to me
You've always been good to me
so trustworthy

when hope is lost, I'll call You Saviour
when pain surrounds, I'll call You healer
when silence falls, You'll be the song within my heart

and I will praise You, and I will praise You
when the tears fall, still I will sing to You
(I will sing to You) I will praise You,
Jesus praise You through the suffering
still I will sing

how faithful and true
sustain me through and through
You are hope and truth
You're my spring of living water
You're my spring of living water

in the lone hour of my sorrow

who springs never fail
be faithful and true
like...
like a spring it never fails
you're my spring never fails


~ Newsboys

Well this about sums it up. God is faithful and true, whether I know what tomorrow holds or not. We may find out some truly awful news this coming week, we may not. We may get good news, we may not. We may not find out anything at all, but regardless I know that God will be with us through it all. HE knows and understands my fears, and sorrow. And He is right here beside me right now. He's got Sam wrapped lovingly in His arms, and in that I rejoice!!! And I will continue to pray for my boy and I ask that you will too.

Friday, November 27, 2009

SSSSOOOOO....

I hate it when I have a conversation with the doctor that makes me more anxious about what is going to happen next!!!
I talked with Dr V today and we were talking about Sam having a bloody stool today, and a fever. Now if he has that von Willebrand's disease I would not be able to give him motrin, so I was asking her questions about that. It then led into her telling me that one of his other blood tests back. She said it was abnormal and that we would definitely be going back to Childrens. My comment was "Oh are the results leading you more toward thinking it is the von Willebrand's disease?" Her response was "I don't want to say anything else until we have the rest of the tests back." So does that mean there is something else that is concerning her? Is it worse than she was expecting? Yikes, just a little bit anxious tonight as I have listened to him say all day that he doesn't feel very well and be very irritable and fussy. I know that God knows, and that He will bring us through, but it is the not knowing that is so hard.... Please continue to pray for my boy. Thanks!!!

Wednesday, November 25, 2009

OK so I've had enough!!!

We had a good day for a good chunk of the day today. We had some quality time with our friends, and made and decorated sugar cookies. The kids had a blast, and Mommy got some adult time. Thanks ladies!!!











Hard to think there is yet ANOTHER thing wrong with this cute little guy....

Then the stinky part of the day, the part where I say I AM SO DONE!!! After Sam's significant bleeding episode while we were in Children's Hospital last month everyone has been talking about testing him for bleeding disorders. Well that work up has now begun. They do a specific test called "Bleeding time" to actually determine how long it takes for someone to clot. A "normal" result would be 1.5 to 5 minutes, Sam's was 13!!! Are you kidding? Seriously? Can't we have a fear about something and have it NOT be anything wrong? Sorry I am on a tirade as we start to think about one more thing with Sam.
Essentially most people think of Hemophelia when they think of a bleeding disorder, which in essence is a deficiency in a clotting factor too. But the difference is that the one that they are now thinking Sam has is farther down the clotting tree, and therefore not as severe. The specific thing that they are testing for is von Willebrands Disease. Which is a Factor VIII deficiency. There are things to do that can treat it, and it can get better or worse with age. We are not sure that this is what he has, but this could be the answer to all the GI bleeding, abdominal pain, bruising, and the bloody noses which have just recently become an issue. This is just the basics but you can read more here: http://www.webmd.com/a-to-z-guides/von-willebrands-disease-topic-overview
We will find out the results of the other blood tests towards the end of next week. Please be praying for Sam, for wisdom and guidance for us and his doctors, and that we can get in to see the Hematologist as quickly as our primary would like. Oh guess what? He weighs 32.5 pounds now!!!

Sunday, November 22, 2009

Home





After a fantastic vacation we came home on tuesday, had IVIG on wednesday and have just had a whirlwind of a few days. The IVIG went very well. We had a great nurse who got the IV on the first try, and we switched to the new product. Since we switched to the product, they had to run it much more slowly than the previous product. So we got to do lots of fun projects and the nurses were a blast. They all are so good to us, even when they aren't our nurse for the day. One nurse who we really haven't had in quite a while always comes and talks with Sam, well this day we had been watching The Lion King. Not sure if you are familiar with the movie, but in the movie, Simba's mom licks his head and makes his mane stand up. Sam requested that this nurse lick his head. And much to his sheer delight she pretended that she did. She wet her hands, and had him close his eyes as she ran her hands over his head, all the while making slurping sounds. They are truly so good to us at Children's.
These last few pics are the pictures from the plane ride home. The kids fell asleep even before we took off, and slept for about two hours. How blessed am I?:-)

Florida Vacation- The Beach









On monday the day before we returned home the whole family went to the beach for the day. What a wonderful time it was. DJ and Lyndsea recommended a beach called Siesta Key, and it was spectacular. White sand beach, warm water, gentle waves and just a lot of fun. Sophia as expected was like a little fish and had a fantastic time, Sam also had a blast but most of his time was spent playing in the sand with Dasanee.

Florida Vacation- The Wedding


Meme' and Sam. As you can see he was looking a little pasty. He was due for his IVIG the next day. Now that we are back to doing it again, I can certainly tell the difference of his energy level and his actual coloring/complextion.

Sophia and Grandpa

My handsome little boy and I

Sam and Deanna

Denise and Davion, can't believe how much this little boy is growing up

My beautiful mom and I

My mom and dad- don't they look fantastic?

Dasanee getting her groove on

DJ and Lyndsea's first dance:-)

Lyndsea and her grandfather



The whole reason for this trip to Florida was to celebrate the marriage of my brother DJ to his beautiful bride Lyndsea! We are so happy for them and we just love Lyndsea. Sam was the ring bearer and Dasanee and two of Lyndsea's other neices were the flower girls. The kids looked fantastic, as did the entire wedding party. The wedding was in this gorgeous courtyard, and just seemed like a fairy tale setting. We all had a wonderful time. The pictures unfortunately are lacking as it was dark, and my camera doesn't do well with the dark. I will post more as I get them from others. But for now this is what I have...

Florida Vacation- Florida Aquarium




















"Look at that cool seahorsie flying thing mom!" said Sam



This turtle was actually above us, like in the ceiling, the kids thought it was fun to have the animals "swimming on my head."

On saturday my mom, Sam, Sophia, Dasanee and I went over to the Florida Aquarium which was a lot of fun. The pictures didn't come out too good but it was a great time. There was also a little water park type area there as well. The kids had a fantastic day, and were all completely exhausted when we came back