It was a good day here in Cincinnati.  The home health nurse showed up at 7:30am, so we had an early start.  Jacob was still upstairs sleeping when she arrived.  As the nurse and I were talking in the kitchen I heard footsteps coming down the stairs and a little voice saying, “Mommy, you woke up.”  I love the fact that he hasn’t been hooked up to the feeding pole these last few mornings. And believe me, he’s very aware that he isn’t hooked up either, particularly during the night.  Last evening I had a visitor in my bedroom at 11:45pm, 1:30am and 4:15am.  He was so cute. He’d just come in and crawl up into bed with me.  We’d snuggle for a few minutes and then I’d tell him we had to go change his diaper and then he had to sleep in his own bed.  I’m pretty sure this could develop into a bad habit and I should put the kabash to it tonight, but we’ll see.  I’m such a softy these days with him.

On the oral medicine front, Jacob did a great job.  He didn’t throw up once.  Now it’s quite a process to get him to take the medicines.  He’s still very leery of the whole puking thing and I have to reassure him repeatedly that he’s not going to throw up and that the medicine will be good for his belly.  He looks at me with such trusting eyes and I’d give anything to be able to take the medicines for him.  But I can’t so I just sit there with him and hold him tight and tell him how proud I am of him and how much I love him.  He’s pretty proud of himself too when he’s done taking them.  The part that is hard is that he’ll say, “You’re all done taking those oral meds now” and I have to tell him that that is true but we’ll have to take more medicines in the evening or tomorrow morning, whatever is the case.  It just doesn’t end for him, but hopefully having several days of not vomiting while taking the meds will make the whole process a lot easier.

Eating…ugh!  He still is not really eating any solid food.  Today he drank close to 40 ounces of water and milk combined, which will hopefully keep him from getting the yellow nose friend put back in tomorrow at the day hospital.  We’ll see…they also may want to play it conservatively with him and place it again to make sure he’s getting his nutrition.  I really hope and pray that it isn’t this last scenario.  Jacob speaks adamantly about not ever having that yellow nose friend again and he’s definitely backed up his words these last few days with some impressive action. 

Please pray for Jacob to remain “free” from his yellow nose friend and also for good lab results tomorrow in clinic. 

I have another request of you all as well.  We’ve had the opportunity to get to know a few other families going through the transplant process here in Cincinnati.  One family, in particular, has really touched my heart.  Their son is also named Jacob and he has a rare immunodeficiency called HLH.  He got his transplant several months before our Jacob and his engraftment has been dropping over the course of the 5 months they’ve been here in Cincinnati.  At this point only 2% of his cells are the donors, but he is doing well despite this.  Jacob’s parents have a meeting with the doctors tomorrow to discuss future options.  I ask you all to say a special prayer for this family for strength and wisdom.  They do have a website at www.caringbridge.com – and then type in jacobvoisinet.  Thank you so much for your love and support.