A 6 week update...

It continues to blow me away how fast a week goes by... Our family has now been home almost 5 months, which equals the time we were away from home after transplant. Being home has been really good for everyone. Angel has settled into a routine and really enjoys the time interacting, playing and just being a kid. Our weekdays typically are busy with therapies, testing, medical regiments, organizing and education. Despite our business we are definitely enjoying our time together. Over the last six weeks Angel has continued to make progress. Though even still at this point his over all care is more than it ever was before transplant. He is almost off of IV fluids at night. He still requires IV fluid for the electrolytes that his new intestines are unable to absorb at this time. He is also on formula feeds 20 hours a day, as he receives 105ml/hr (about 3.5oz/ hr) of formula. One thing that continues to be a topic of discussion for both Angel and Hudson is the abdominal wound. Angel continues to have dressing changes and it appears that the wound will be around for a few more months. The hope was that by summer the wound would be closed and Angel's central line would be removed. But at this point it may be a little longer than we had hoped. Our goal is that by the time Angel and Hudson start school in the fall Angel will be wound and central line free. This will be a huge accomplishment as Angel has always had a central line, literal since birth he has always had a line. The day the line comes out will be a monumental day and everyday without it will be soo incredibly surreal.
We as a family have had some high points this last six weeks. We celebrated Easter with both sides of the family. The weather was amazing and boys really enjoyed doing an egg hunt and playing with cousins. Another highlight over these last few weeks was Disneyland. We had a friend from out of state who was going to be at Disneyland and we couldn't resist the invitation. Angel wore a mask the entire day without a complaint, both Hudson and Angel had a great time. At the end of they day they both picked out outfits from the Star Wars movie and put them on before we left the park it was soo wonderful to see their excitement.
Currently our biggest challenge is to keep Angel out of trouble and maintain steady progress. The current buzz over the "swine flu" has definitely got the attention of many, including us. But it is weirdly familiar reading articles and watching the news. Because the reality is this is how we see the general public as a threat for Angel on a daily basis. The potential problems for Angel when he gets sick can be catastrophic for him. Though like the "swine flu" most cases are minor at this point but there are a few deadly cases. An infection on any level for Angel can be minor but also can potentially cause a lot of problems for him. So being in isolation or wearing a mask in public has been common place for him. So seeing on the news people all over the world trying to protect themselves with masked, isolation and cancelled public appearances is just all too familiar. Such a strange reality for us.
I will end with this post with the news that Angel's donor family emailed us this week. We replied to the letter we received from them in November and they JUST received it. The story is nothing short of yet ANOTHER miracle of God working in Angel's amazing life. It is much too poignant and important to share at the end of a post like this so I promise to come back and devote an entire post to this story. Suffice it to say it has been an emotional week for us getting to know them and feeling the gravity of having another precious child's death giving life to our child.

Thank you all for your continued love and support. We are here as a family because of the many prayers and helping hands that have intervened over these last few months. We as a family are forever grateful.

Blessing to all...