Just a quick status update as I don’t have time for a long thoughtful post! We came home from hospital on Friday afternoon after a pretty long week.
The Good: We met with our speech therapist on Thursday and she felt that Gavin’s voice is much stronger, and that whatever mistakes he’s making are just down to age. Although he isn’t the most articulate compared to some of his peers, he’s still communicating with us and hopefully the problems he’s got now will resolve before he turns three. Because of that she didn’t feel that he’ll need later therapy before school. In other good news, our physiotherapist also felt that he’s made great strides and is kind of doing his own physio just by being a toddler, so formal physio is not a complete necessity for him either. Awesome!
The Bad: Gavin was really nauseated from Tuesday to Saturday and we lost his NG tube two nights running, which meant that it had to be put back in two mornings running, not a great way to start the day. Because of his nausea, there was a lot of vomiting and so he ended up losing a whole kilo during the week. He didn’t get over it until today, so will need a few extra calories to get back to where he was. He’s still looking pretty sickly but his counts haven’t dipped lower than low yet, so he’s feeling okay and is still a crazy-busy little boy, albeit weak and wobbly from chemo and lack of food.
The Ugly: This morning at 5:45 I sprang out of bed in alarm as I heard a thump from the next room followed by a wail. I’d been sleeping in the guest room as I find myself watching Gavin for most of the night when I sleep near him. Unfortunately, he’d been really restless and obviously not well, and Craig took him into the bed with him, as we often do. Of course last night would be the first time ever that Gavin tumbled out of bed, right onto his head. The top of his head swelled up right away but after icing went down again. He seemed fine after a minute or so, but this kid has a shunt and recent brain surgery to think about. So after a quick call to the hospital we headed in and made it there just after 7:00. We did some x-rays to determine that all was okay with the shunt and it was fine. Clinically, all the doctors thought he was well, it was a “just-in-case” scenario, but of course it kept us there all morning, and then we had to hold his feeds, also “just-in-case”. OH, words CAN’T express our frustration.
Gavin was extremely bored and just wanted to leave the room in emerg. and not have to listen to Mum and Dad chat with the doctor parade. We saw our neurosurgeon for the first time in ages and he was very happy with Gavin’s progress, so I guess the visit wasn’t a total loss.
If only I didn’t have to go back tomorrow for our clinic appointment!
Ugh, if it’s not one thing it’s another!! Glad that there is news of progress, I am so happy to hear that. I’m sorry Gavin fell out of bed, poor little guy. Hugs to you guys for lots of strength this week.
I’m so relieved that the bump on the head was not serious. I hope you find some small ways to enjoy a few moments in between all the appointments this week.