A little bit of "normal"

GOOD NEWS! Both of Emersons lines responded to the TPA and we were able to draw blood back off of both lumens. We've been sent home on pass until tomorrow. Our Immunologist and Hematologist are meeting with hospital management to see if there is a better way of allowing us to spend time at home while Emerson is feeling a bit better before transplant without wasting money on keeping our room on unit 2. I'm eager to hear what they have come up with. We had our clinic visit on Monday and they were able to use his line for drawing off his blood work. His vitals were normal and he's been feeling/acting way better since his transfusions and new medication. Our Immunoogist let us know the bone marrow transplant team would be connecting with us in the near future to discuss the process and how to prepare ourselves for it. I have a huge knot in my stomach thinking about it. She also told us that once we find a match we will have a million appointments we need to get done that will test Emerson's organs to make sure everything is functioning properly before we go ahead with chemotherapy/BMT.

Our first of these appointments is tomorrow to test his ears. It's common for SCID patients to need tubes put in their ears because of fluid retention caused by continuous infection and runny nose. Emerson has never had an ear infection and I don't think he has any hearing loss but it is still good to get tested because he has para and rhino virus on board giving him a very runny nose ( the nose frida suction has been my BFF and saviour). After our ear apt they will draw another blood sample and hopefully tell us the new plan for admission without being on pass.

Since being home Emerson is more himself everyday. The last two days he has been giggling and babbling non-stop. It is SO nice to hear his little voice. He's still not wanting to crawl much but now it will be hard with the central line because the clips keeping the lines closed are bulky. He's been using his walker a bit which makes me happy. Id really like to see him put on some more weight and muscle mass before having to be admitted again for his chemo/BMT. Even with everything going well at home Ive had a very heavy heart since our last admission. I think maybe the diagnosis has finally sunk in, like really sunk in. Deep into my bones and is trying to make me sick too. I see so many happy posts on social media and all I feel is bitterness and jealousy. Then I feel guilt because I can't even be happy for the people close to me. For the past week Ive been on the verge of tears every time I think about our lives. I know things will get easier but right now they really suck. SCID sucks..

But this little boy makes everything all worth it. I would do anything in my power to take his pain away and make him better.. We will get through this.. 

D, xo