I am going to post the whole post from that entry just so I can show that it was Kate’s words. I made the paragraph about the baby in bold.
- Written June 18, 2013 12:07pm by Kate Parker
Wow, four days have gone by since I’ve said anything. I don’t know why, exactly. I guess maybe I’m not sure what to say. Nothing has changed. Joshua is mostly content when he is awake. He needs his environment to be low-key & thankfully, his siblings are understanding of that need & are conscientious about speaking quietly and keeping pretty calm around their brother. Head pain is adequately controlled with his hourly dose of IV fentanyl plus a few breakthrough doses each day. Joshie lays down when his head is bothering him, which helps to avoid the need for a lot of extra doses of medication. Two days ago, he asked me to turn down his tube feed because the rate he was getting was making his belly hurt. I have tried to not focus on how 1.5 ounces per hour of fluid is “too much” for his gut to be comfortable with. I backed him down to 1 ounce per hour and he’s tolerating that without problem.
Overall, the picture with Joshua remains one of very slow, inexorable decline. We love on him as he is able to tolerate it & do our best to make him giggle every day. Other than that, there is not much we can do outside of catering to his every whim & trying to make sure his environment is kept as ideal as possible so his head hurts as little as possible. It’s not much, but it’s all we’re left with. I am thankful we have what we do.
On a happier subject, Adam & Faith shared with us on Father’s Day that they are expecting a baby (due at the end of February). Adam knelt beside his little brother’s bedside & quietly shared the news, to which Joshie exclaimed happily, “Oh yayyyyyy!” He later told us that he thinks Adam & Faith are going to have a cute cute cute baby girl and we will need to buy cute baby girl clothes that are as cute as him. Yes, we all laughed & agreed that we’d have to do that.
I was so happy to hear the news and learn that I am going to be a Grandma & I was so happy for Faith & Adam, but what made me smile the most was realizing the special gift Adam was given by being able to tell his best friend, his little brother, this incredibly special news face-to-face. I am so thankful that God allowed Joshua to be here to share in his brother’s joy. Joshua doesn’t understand the concept of being an uncle, but he knows what babies are & hearing his happy squeal and Adam’s subsequent laugh emanating from the bedroom told me what a special moment it was for both of them. I’m thankful Adam will always have the memory of telling Joshua about Faith & his first child. It will be a treasured one, for sure.