Monday, April 12, 2010


It has been a few weeks since our last post and things and been very quiet.  I don't think we have been in a doctor's office since we got back from Boston in March, no ER trips, no damaged central line sites.  We've even managed to go over two weeks without losing a central line dressing.  Can we maybe have a normal summer this year??

Sam has been doing very well.  He has "graduated" from physical therapy as we have blown away all of his goals.  He is still having speech therapy weekly and if you listen close you can catch a lot of words inside what used to be a whole lot of blabbering.  Sam loves to talk on the phone, "Hello" and "Goodbye" over and over again.   His new fascination lately has been the word "WOW!".

We have also been working on potty training, but that is not going quite as well as we hoped.  Sam loves to sit on the potty chair, as long as he is fully clothes and wearing a diaper.  He just doesn't  like the way the seat feels on his bare but.  Oh well, he will get there eventually.  He is showing awareness of the fact that he is pooping and likes to hide when he does it.  Although this can be frustrating (especially when he is leaking all over the floor), it is a good sign and something to work with.  The bad side of this is that Sam is not as tolerant of dirty diapers as he used to be overnight.  Starting about a week ago we are now up every night and least 2 to 3 times to change his diaper.  We have been so spoiled for so long as Sam has slept through the night since we first brought him home when he was 3 months old.   Not having to get up to feed a baby was one (small) benefit that we at least gained with Sam's disease.

Sam enjoyed Easter, but was not really into the hidden eggs so much one he realized that they had candy in them.  That was fine with Ryan who, of course, got to eat all of the chocolate.

With summer upon us and Sam being more active we have had to increase the amount of hydration that Sam received through his IV.  This has become a challenge due to the fact that Sam is not used to being "hooked up" to an IV during the day when he is not in his crib.  Since he doesn't remember to take his bag with him and the dog doesn't see the line stretched between the bag and Sam, we have had to start using a backback for Sam during the day when he needs hydration.  He screamed bloody murder for the first hour, but we refused to give in and he eventually forgot that it was there and went about his business of climbing and running.  This will, hopefully, make it much easier to manage trips outdoors and camping this summer.

Buddy is growing way too fast and has doubled in size in two months.  At 25 weeks old he is now 43 pounds.  The kids still love having the dog around, but Sam knows that when Buddy gets excited it is time to be picked up.  It didn't take him long to figure out how easy it is for Buddy to knock him down.

Sam and Ryan have been getting along very well lately, except for the days when Sam decides to bully Ryan.

In other news, Sam has been accepted into the Littlest Heros Project.  The Littlest Heros Project is a network of photographers that provide free photo sessions to any child who suffers from any type of serious illness or life altering disability.  We are excited to hopefully get some really good, professional pictures of Sam.

Next Monday we will be traveling to Madison to meet who will hopefully become Sam's new primary GI doctor.  We will also be meeting with the nutrition group and the social worker at American Family Children's Hospital in Madison on the same day.  If all goes well, we will be transitioning the primary responsibility for Sam's care to Madison over the next two months.  Sam and Jason are headed back to Boston in May and then, depending on our Omegaven situation, we may not be back to Boston for 4 to 6 months!!

Sometime since our last post I added a bunch of pictures from Sam's birthday to the photo section, enjoy!

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