Now that our lives revolve around treatment, we jumped off a plane, got a little sleep and then woke up extra early to start our day at the Hospital for Sick Kids. We thought that the kids would be sleepy from traveling so that it might makes things easier and they would sleep most of the day. That definitely was not the case, they were pretty miserable, and we couldn’t blame them. We were all over tired and ready and to be in our own beds.
My sister came down to give Marks parents a break and it was nice to have some new company. She was great trying to keep Josef entertained and cuddled with Claire when she wasn’t sleeping.
Late afternoon we noticed that Josef was becoming extremely fussy and then he started throwing up and we just couldn’t get it to stop. This can be a side effect from the drug, but we hope he is just having a rough day. After some extra nausea meds, he became sleepy and settled. We managed to get him home to bed and he was able to sleep it off.
Its incredibly hard to bring a healthy kid into a hospital and bring them home sick. We can’t explain to a little boy that this treatment is saving his life, so he must do it. Next time we will give him an extra dose of anti-nausea meds to help prevent it, in case this does happen again. Claire never had a reaction, so thought it would be the same for him. We are quickly learning that each kid reacts so differently to the enzyme. Now Claire seems to run a low-grade fever the next day, and has less of an appetite, and after reaching out to the other batten parents, I realize this is common too. This just gets added to our new normal, and we figure it out as we go.