It's back:-(

Sam has not complained of belly pain in four days but unfortunately yesterday he started complaining his belly was hurting again.:=( The first time he complained was not when he was eating, and then he complained a couple more times before supper and then a little while we were eating. Ugghhh so frustrating! I am hoping it was a fluke thing, this morning he is gaggy so I am not sure what is going on. He doesn't want to eat anything either but he did eat well last night.
They got to play outside a little yesterday with daddy which is always nice. They LOVE it, and hten I get to make supper without whiny kids, which I LOVE:-) My in-laws have agreed to watch the kiddos for us each tuesday for the next several weeks so Matt and I can go to a small group bible study. Last night was our first night and I was really happy we got to go. I am hoping and praying that we both can grow in our relationship with God and each other through this time. A special thank you to my Grandma and Grandpa for taking care of the rugrats for us.
Please pray for my sister Denise today. She is 34 wks pregnant with a little girl. Her pregnancy has been rather complicated and then yesterday they did an ultrasound that showed that the baby's heart wall is too thick, and that her kidneys and liver are enlarged. We don't know what any of this means yet, but we are just praying for God to heal this little one.

Up to 24!!!

Uggh I am so tired of this ridiculous amount of snow! This storm alone could dump another 24inches on us. Not to mention another one coming this weekend! The snow is deep enough that the kids can't really walk in it. Matt snowblowed most of the yard into a big hill for the kids to slep on, and then he iced it down so they could go really fast. It is really

. He put a ladder in the side of it. Sophia was going down just on her belly. Sam was going down on the sled. Thanks Daddy! We will have to try to unbeary it today.
I spoke with Sam's GI doctor for a while yesterday. We are both fairly baffled with why he is having all this belly pain again:-( It all stems back to all those bloody noses a couple of weeks ago. But that blood should no longer be irritating his belly. We are going to start another reflux med, and we are praying that this will do the trick for him. Just have to wait for the health insurance to improve it, and the roads to be drivable:-)

Job 37:6:
For he saith to the snow, Be thou on the earth; likewise to the small rain, and to the great rain of his strength.

IVIG

Sam had his IVIG today and as it seems to be the trend lately they had a tough time getting the IV in:-( He cried as soon as they pulled the IV cart in, between the ER on friday and the surgery he is COMPLETELY DONE with the medical issues right now. Poor guy! We see the immunologist next week, I will be curious to see what his thoughts/plans are as we move forward with the IVIG, if/when their will be a trial off it again, dosage changes etc etc.
We haven't had any more bleeding since the mild bloody nose last night, so I am so thankful. We stopped the amicar last night, so I will be praying that we have no recurrence of bleeding now that he is off.
We had a wonderful playdate today with lots of friends. It wasn't planned to be this way but we ended up with 9 kiddos here today:-) My house is going to take a while to recuperate but I am glad that Sammy is feeling up to running around and playing and making a mess with his friends.
Preschool tomorrow, then another playdate, and then MORE SNOW!!! I am done with winter I have decided. The negative temps, and wind chill are bad enough, and then the snow is so deep the kids can't even play in it. Oh well! Spring is coming right???

Day 11

Playtime with Uncle Bud! He is looking pretty pale today:-(



We thankfully made it safe and sound to my aunt and uncles last night. The driving was a little nerve racking but God protected us and here we are. Sammy had an ok day today, it seems as though he rallies in order to be able to play, but then turns around and is pretty wiped out and crabby. Eating is continuing to be a huge challenge.
His night last night was pretty awful. I did end up calling the doctors office this morning. The nurse was really concerned and recommended that I take him into the ER to get him evaluated. She then proceeded to warn me how long of a visit it woudl be. She said that she thought he was dehydrated. Then my nurse brain kicked in, I knew that he wasn't dehydrated enough to warrent IV fluids, and therefore we would sit in the ER for who knows how long, exposing him to who knows what! I told the nurse that I really just wanted someone in the office to see him, but she said it sounded more as though the ER should. I decided against the ER with the thought that if things got worse I would bring him in. Thankfully they didn't get worse!
I got a whole glass of milk into him this morning and he had some soup as well. Keeping him nourished and hydrated is a huge challenge. I am so thankful that I have been staying with people who love him too and who are just as invested in getting him better. This is certainly a full time job!
He is just loving playing with Uncle Bud:-)

Recovery Day 10

I can't believe it has been ten days!!! I am so thankful to have ten days behind us towards him being better. Unfortunately we are in another high risk of bleeding phase of the recovery. From day 10-12 is another high risk of bleeding, and with his bleeding disorder we are even more at risk. I know that God will continue to see us through this recovery and that in Him all will be ok.
He slept pretty well last night, he only woke up once. Today his appetite is TERRIBLE! He has lost so much weight I am very concerned. I wish I could lose weight like him (instead of him). He is now complaining when he sits at a kitchen chair that it hurts his back, I am sure it is because there is nothing covering his ribs/spine except the stretched skin:-( Please pray that we can get him eating again so he can put on some weight and feel better. When this whole thing started he was 38 and a half pounds and he is down to 32!!! Six pounds is a lot when you were already very thin.
We ended up getting 26inches of snow!!! It is crazy out there, I will be leaving later today to go to my aunt and uncles, just a town over. I am a little nervous to venture out in this weather though....

Last week in pictures

We had a big sleep over at Auntie Sara's house on saturday night. The kids had such a blast and really all behaved so well. They slept fairly well, well Sam did. Of course that probably should have been a hint that there was something going on. He usually wakes up a time or two at night for a drink of water or soemthing, but that night he slept straight through, and that was the day before all the bleeding and craziness started again

Sam and JJ had a blast playing firefighter and police men.

Milk shakes with our sleep over buddies










6 kids, dressed and ready for church on time!!!


Sophia exhausted fell asleep in her chair

Jumping off the trailer sure is a blast right Sam?

Winter fun with Daddy

It seems like this year with all of Sammy's temperature issues that we are missing all of the fun of winter:-( Last year Matt made a little tiny hill in our backyard and Sammy went sledding and has been asking all winter every time it snows if he can go sledding or play out in the snow. Well we finally let him the other day, we had a couple of days of an almost normal temp, and it wasn't too cold so out he went and he had a blast. It was only like 20minutes or so but he had fun.
AS we continue to wait for more blood work results we have to keep trusting in God to keep him safe. And on those days when his body is warm, we will got out and enjoy this CRAZY NEW ENGLAND WEATHER!!!

Not quite sure what they were doing but they were having fun doing it:-)



My baby boy growing up SO FAST

So handsome! Yup he does have pink mittens, couldn't manage to find his so we borrowed Sophia's. He might not let me get away with that much longer:-)

Winter time fun

Matt snowblowed the yard the other day and made a hill for Sammy to sled on. He had an absolute blast. And then today it was nearly 60 degrees, so today Matt let him jump around in a puddle. I don't have pictures but just imagine all the snow we have had and it melting into a big giant muddy mess. Imagine the fun a two year old can have in that.... Oh well maybe another day we will get the pics of the mud.