It has been almost a week since our last post so we just wanted to give everyone a quick review of our last few days. We have heard from several parents of "Omegaven Kids" and, since we have not had a chance to respond to everyone personally, we just wanted to say thank you to those that have taken the time to send us messages to let us know about their experiences in Boston. The opinions of other parents who have been in similar situations and have had to make similar decisions has meant more to us than the opinions of the medical professionals that have been supplying us with medical advice.
We are working through all of the red tape that is needed to get to Boston. So far it has not been too bad, just a lot of information to gather and coordinate. Everything seemed so overwhelming at first, but when you take a step back and let the people that are there to help do their job it is not so bad. We are very lucky in the fact that our health insurance provider uses a third party Coordinated Health Care company which helps greatly when you are trying to get everything together and to the right person at the right time. Sam's trip to Boston will make things a little hectic again for all of us, but hopefully we will see good results in Sam like so many other people have. Jason will be flying out with Deb and Sam for the first few days and then heading back to Wisconsin for work and Ryan duty. Poor Deb will be homesick I am sure. By the time she returns home we will have lived in our house for six months and Deb will be lucky to have been here for 2 months of that time. Eventually we might finish unpacking and actually get some decorating done - by that time it may be Christmas decorating though.
Sam has had several very awake and alert days recently. He loves to smile at his brother. His color has worsened a little over the last few days and we are awaiting his latest round of blood work to see if his bilirubin levels have actually taken a spike in the upward direction. This week will be our first week that we do not have to travel out of town for his weekly doctor visit as we will be visiting our local pediatrician instead.
On Monday Sam weighed 8 pounds 3 ounces! We broke that 8 pound mark for the first time ever, and hopefully we continue to have a modest weight gain.
I have added quite a few pictures to Sam's photo gallery. Just a warning that if you look at the pictures from March 10th they are pretty disturbing. This is the day he was sent home from the birthing center and those pictures were taken just a few hours after we brought him home. It is amazing to see his pictures now and think back to that time when we were not sure if he was even going to survive through each day.
We also added a new guestbook to the journal that is a little more similar to how things were set up on our Caringbridge site. Please take a moment to sign our guestbook when you get a chance.