Daniel Update

So we got up at 3:30 in the morning and got on the road by 4:30 AM! UGH! My neice, Andrea, went with us so I could stay awake. She has been WONDERFUL! A definate life savor! So we get to his clinical and everyone is amazed at how much he has grown. We met our new nurse, Darcy. VERY nice! Our pre-transplant nurse, Lonisa, stopped by. I think she was there more to pick up the chocolate covered cinnamon bears, but we'll take a visit from her! (Just kidding! She tries to come a visit every time we are here.) So we met with the team. We had some wonderful news! Daniel is in the 40th percentile for height and 70th percentile for weight. Considering that he has always been below 3%....we are LOVING those numbers!!! We also found out if the results from his biopsy today are good and no signs of atrophy we will be able to go off 3 more meds and NO TUBE!!! We are WAY excited about that!!! So that is what we have been praying for the last 24 hours! We should know in a week!
We were exhausted last night....slept great for today! We got here (the hospital) and our 'old' nurse, Amy was here to visit. So good to see her and visit. Daniel even warmed up to her after about 30 minutes and played dinosaurs with her. She has never seen that side of him!
So putting the IV in wasn't good! 4th time was a charm. UGH! Hate it when that happens! Biopsy went well evne though they had to 'poke' 3 times! Visually everthing went well, Dr. Alexander said. So we'll find out in about a week! He now has to lay flat for 8 hours. he is doing much better this time than he has in teh past. I (obviously) am not holding him! I am sitting close to the bed, but not in it! So, anyhow, we will be here until 11:30 pm. Go back to the hotel and sleep! Get up and drive home tomorrow!
Thanks to everyone who wished me Happy Birthday yesterday! I spent it in CA for the second year in a row. I guess the kids are ready for cake and ice cream when we get home tomorrow! So am I! :-)