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


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