Jacob playing with his new toys
Jacob is showing how old he is now.
He says this is harder than two fingers.
He is really concentrating.
Jacob is delighted to frost his cake with Ethan!
(Too bad he wouldn't eat any of it.)
Putting on the finishing touches!
We celebrated Jacob's 3rd birthday in the hospital and I think he had a fun time. I was in the room with Jacob, and Josh was outside the room with Ethan. Josh wiped off gifts to get ready to be in Jacob's room and Ethan had the job of handing them to Jacob. After gifts, the boys decorated a birthday cake in the doorway. Jacob had a lot of fun and as I was putting him to bed that night, he told me "I want to go home." We really miss being all together as this process continues to drag on.
Yesterday Jacob had the NJ tube placed. It passed the test of not coming up when he vomited, like the NG tube did. After some complications with the tube kinking inside of Jacob, we finally got it working this morning and now Jacob is getting pedialyte through it. He's starting with only 1 teaspoon/hour to see how he tolerates it, and then it will gradually increase. He is still getting hydration through his central line until he is getting the proper amount of nutrition through his tube. Jacob is still getting used to having a tube taped to his face, but at least he hasn't tried pulling it out. He does seem sad about it though, which breaks my heart. He has barely said anything or smiled at all these past two days. I really wish he could have his big brother here with him. Ethan really seems to brighten Jacob's day the most.
1 comment:
Hi Kylene,
I am a mom of a CGD son as well. And we are with CHLA too. My son was diagnosed a little over a year ago and we are considering BMT too. But he doesn't have a match yet. Another CGD mom led me to your blog. Thank you for sharing. I am thinking of you and your son and hoping for a complete healing. Alice
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