Emily's update and 100 day mark

We spent most of the day at the hospital today having blood tests, a bone marrow poke and an NG tube(feeding tube) put in. As you can imagine, this was not something Emily was very excited for! Mike, the child life specialist, came in with a new doll and helped "Dr. Heaps" put an NG tube into her nose. It was fun for her to have things explained to her as she performed the procedure on her doll.

We are hoping that she will be eating on her own again soon, but for now, Matt and I are excited that she will actually be getting some much needed nutrition into her body! I was excited until they started telling me everything that I would have to do to hook her up at night.(I feel tired already!) I know it will just take time to get used to and everything will be just fine.

When the nurse came in after seeing that Emily lost weight this week she tried to convince me that all I need to do is FORCE her to eat. "It will only take a few times and she will learn that she can't win." I looked at her in awe and said, "I will not force Emily to eat. I am doing my best but I am not going to force her to eat and then watch her throw it up!" I am realizing this is just one of those times when I have to listen to to spirit telling me what to do. I know that Emily is not just being difficult and trying to prove a point when she doesn't eat. She doesn't have an appetite, she has no desire to eat and when she does eat, she gets full very fast. She is not trying to prove a point that she is the boss. I can understand this could be the case with some kids; and that is why the nurse is saying what she says, but she's MY daughter and that just doesn't sit right with me. (Sorry, I had to do a little venting!)

Emily doesn't like how it feels in her throat and in her nose; who would? Mike assured her that she would get used to it and forget it's even there. This made her feel better and more at ease. It's so great that she trusts him, I LOVE child life!

We were concentrating so much on the NG tube that when we put Emily in the car to go home and she said "Ouch it hurts!" we weren't sure why. We laughed at ourselves remembering that she had also had bone marrow taken out of her hip; of course she would be hurting!

The test results will be back next week; we will then be meeting with the doctors to discuss what the plan will be. We are concerned because her counts have gone down even more from last week. Her ANC is now at 400 and her white blood count is also really low. After the nurse took out Emily's bone marrow she said it didn't look good. This could mean that it just needs more time. The doctors are excited to get the test results and try to figure out what is going on. We are still wondering if it is the Epstein Bar virus that is just taking it's toll on her.

Today is the official 100 day mark. Ya Hoo?? Just a reminder that it is just the time when Emily has more tests done to see if there is any "activity" going on. For us, it really doesn't mean much but they like to count it down anyway. We thought it was a huge milestone the way they talked but with SCID kids it takes a LOT longer then 100 days to make a real difference. regardless it is amazing that it has been 100 days!