Thursday, December 31, 2009

Ringing in the New Year kiddy style

Happy New Year everyone!!!


They didn't know that the clock was set ahead a few hours... They were thrilled to celebrate the New Year with noise makers just like adults do:-)

Wednesday, December 30, 2009

Our new Hippo Tent

Auntie Tracy and Uncle Tim and their kids got us this really cool Hippopotamus tent. The kids LOVE it!!! And finally Sammy has NOT been sleeping with us! Not something I mention often, but the poor guy is so traumatized each time he goes into the hospital that he wakes at night often, and doesn't sleep by himself, meaning he sleeps with us. Well he has spent several nights sleeping in his new tent, and although he wakes up and looks to make sure we are there, he has stayed in his tent. Thanks guys!!!



The waiting game....

Well we had our hematology appointment and essentially are NO WHERE different. I don't know why I was thinking that we might get some type of answer but of course we didn't. What we did get was "Well you have peaked out curiosity, it will be intersting to see what we find out. He is quite the mystery." NOT at all what I was hoping to hear. Then of course we got the lecture about bleeding being a huge risk for him, even if there isn't an actual diagnosis, and they said that we should always go to a bigger hospital for injuries/procedures so they can be prepared for a bleeding episode. So that is kind of scary..
The good news? Sam is 38inches and 32 pounds!!! He is certainly growing:-)
They took lots of blood and are running all kinds of tests. They should all be back within two weeks. So now we just continue to play the waiting game with what is going on with Sam.....

Sunday, December 27, 2009

Sssooooo

Well prayerfully your Christmas was fabulous this year. This year has been quite the challenge but we are looking forward to 2010 being a year in which God moves mountains!!!
Unfortunatley my camera broke and at this moment we don't have the money to replace it so we don't have pictures to post. I am waiting to get some from family and friend who have taken some over this Christmas season.
The kids had a great Christmas. Sam's big gift was a Train table, and all the accesories. He has really been enjoying it, although his first comment led me to believe otherwise. Imagine you are all excited for your children to walk downstairs into the living room and see this train table that you think they are just going to love....and your very loving kind sweet 3 year turns to you with a smug look on his face after he has seen the table (and not opened any presents yet) "Mom I TOLD you that I wanted a monster for Christmas." Ugghhh, I was so mad, but he got excited about it after a little while.
Sophia's mommy insticts have surfaced in full force. She cuddles and kisses, feeds and puts her new babies to bed with a blanket. It is amazing to see her blossoming into this loving tender spirited little girl.
Tomorrow we go to see the hematologist for Sam. Truth be told I am very anxious about it, as almost two years exactly (Jan 3, 2008) we went to hematology and that is where they mentioned that dreaded word LEUKEMIA. We are so thankful that Sam did not have leukemia, but going back to that doctor and knowing the concern that Dr V has right now for him, is bringing back that strong anxiety. Please pray for Sam and for his doctors that they would have the wisdom to get him better.

Tuesday, December 22, 2009

Failur to Thrive: NOT!!!!

Painting (more herself than the paper:)

So my little tiny pip squeak had a follow up weight check today, and lets just say that I NO LONGER have to worry about her weight!!! She no longer falls into the failure to thrive category and has actually jumped up on the growth chart to the
20th percentile!!! She is 23lbs fully clothed!! Way to go Sophia. Dr V was very happy with her growth. We will be weaning her from the pediasure in the next six weeks or so (per GI instructions) and so at that point we may end up doing weight checks again depending on if she actually developes an appetite by then. But for now NO WORRIES!!!! So hmmmm, what should I call this little beauty of mine instead of pipsqueak?

Monday, December 14, 2009

Popcorn kernels + nose= Not a good combo

I guess it was bound to happen, my silly boy stuck something up his nose. I can't even believe it was popcorn. Crazy kid! He all of a sudden started saying "mommy help it won't come out!" I had no idea what he was talking about! So of course I look up there, and low and behold what do I see?!?!? A popcorn kernel! Thankfully he was able to blow it out with a little prodding from me and we didn't have any issues. But I totally can see how this could be an ER situation. I was getting really anxious as I was trying to get it out. Thankfully he is old enough to know how to blow, and he has big nostrils. But I still can't believe it!!!
He also had a bloody stool today:-( Has had increased abdominal pain and now has watery diarrhea. Poor guy. Of course Dr V is on vacation until wednesday so hopefully nothing crazy will happen tomorrow. But I am sure I will touch base with her at least by wednesday....

Friday, December 11, 2009

IVIG and low body temp

Hmmm, first we had IVIG yesterday and EVERYTHING went smoothly! We had our favorite nurse, and our favorite child life specialist. Everything was awesome. They got the IV in on the first try, he had no reactions to the treatment. It was fabulous. The only issue yesterday was that he was COLD. The initial temp was 95.9 (35.5 celsius) He only warmed up to 96.1 the whole time we were there. They said to check his temp when we got home and then to call the doctor if it was still low. He was 96.2 when I got home, so I called the doctor. I spoke with a nurse who didn't seem too bright, I know that is mean but she just seemed completely clueless, she said she would let the doctor know and call back. That was yesterday afternoon, and I still haven't heard anything yet...

Sunday, December 6, 2009

O Christmas Tree




Hot Chocolate anyone?


Helping Daddy


Isn't this a beauty?



O Christmas tree! Oh Christmas tree! How lovely are your branches... We had the most wonderful time the other day going and picking our tree. It was such a fun thing to do as a family. The place we went even gives the kids pretend saws to help daddy cut down the tree. It was snowing very lightly, it was cold and it was just a fun day. Afterwards we got to go in and enjoy some hot chocolate and cookies while we warmed up by the fire place. What a fun new family tradition:-)

Friday, December 4, 2009

Children's Hospital Boston




Well our follow up with GI went well today. He was happy with Sophia's weight gain, although wants her to grow more. She is now 22lb 10oz, she is in the 14th percentile, which is way better than not being on the chart at all:-) As far as Sam goes no new news. GI doc is very curious to find out what Dr V is thinking, and what hematology will determine. He was quick to remind me that this is not the typical way that any bleeding disorder presents, and that this could be an answer to ALL of the GI problems! I am praying that it is.
We attempted to get Christmas pics of the kids the other day, we are going to try again tomorrow, as Sophia was completely disagreeable. But here are some of the ones from the other day

Thursday, December 3, 2009

Blood Donors

Making new friends, this is Keegan. You are helping Keegan too!!!

We thought this was his last treatment back in March, but we tried six months off and he kept getting sick again.

Riding the IV pole in true BIG boy fashion

Enjoying feeling well and playing with our favorite person at the infusion center

Sammy became a big brother during this time



Our first IVIG treatment, Sammy was 13months old

I was over reading a blogging buddies website today and was reminded of something that I ALWAYS take for granted. Blood donors!!!
Dear Blood Donor,
It is because of you that my son has been so much healthier. His first year he was so sick and almost never well. You see his immune system essentially doesn't work. So he needs help to not get sick. That is where you come in! When we started the IVIG, it was like night and day the difference in his health. IVIG, is the antibody portion of your blood donation! Sam has been thriving and is a happy energetic child. The number of blood donors that it takes to make one dose of the IVIG is astronomical and we want to thank each of the thousands of you that are so gracious in giving your blood and your time to help people like my Sam:-) Thank you from the bottom of our hearts.
Please continue to donate, and encourage your family and friends to donate too.
With Love,
The Weber Family

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.