Update 5/22/09

Just a few thing to report on for the day.

1. Beck's hemoglobin rose to 7.4 today! What is even better is that it rose without the help of more blood transfusions. We are sure hoping that this is due to the IVIG and the high doses of steroids that he is on at the present (even though his platelets did not respond to either).

2. Platelets once again clumped together during his blood draw, thus making it impossible to get a current level. I asked the question about whether or not this is concerning for his platelets to continually clump, and was told that it is strange, but not totally abnormal. I wasn't very comforted by this answer and asked that Beckham not be released from the hospital (just in case it happens sooner than later) until a they get a current platelet level. Tomorrow they will draw his blood a different way and rushing it to the lab to make sure that they get a current level.

3. Beckham still remains extremely lethargic and sleeps most of the day. When he is not sleeping he is yelling at everyone and their dog, and cursing (baby cursing) them into the next milleneum. I'm a little scared that with all of this steroid anger, that his eyebrows will stay perminantly in a "v" shape from all of his scowles. I was however, told today by the hem/onc doctors that his anger is a good sign and that we should also be seeing an increase in appetite. I sure wish the latter was the case. Beckham still has no appetite and what he does eat (which is usally Pediasure...nasty) he vomits.

4. Beck did get an ECHO of his heart just to make sure that everything was working as it should, and that nothing was effected from his loss of red blood cells (which was a high possibility), and sure enough, his ticker is looking amazing and working like a dream. I know that I have said this many times before, but Beck sure has one amazing, perfect heart.

With all of the these, the possibility of going home is something we all would love, but we are sure being extra cautious at the same time - not to go home too soon, just to be rushed right back (which has happened many times). Beck still has a long way to go, and his body is not recovering from this with the same vigor that it has in previous times. I am still a little worried about how weak and lethargic he remains, and trust me, I have brought that up to each of his doctors (I should just change my name to queen paranoid), but he is in the right place, and I can only imagine what his body is trying to recover from and the amount of time it will take him to get back to his crazy self.

Thank you a million, trillion times for all of the prayers and kind thoughts our way. Especially thank you to all of the people who have reached out to us who have children, or know of children who have suffered from the same, or similar illnesses as Beckham. It has helped so tremendosly. I have talked to his doctors about all of these cases and I am know that they have helped them.

-Beck & fam