As expected, Kai did well at the clinic yesterday. Although his hearing tests are always a challenge, they were (after 3 different screening methods) able to confirm his hearing is working just fine. The problem seems to be that he just isn’t that interested in their tests.
After audiology we went back over to the clinic to talk to Christine and check his lab work. After two weeks off his labs came back good. Christine was impressed by how well Kai was doing and at one point even said to us ‘He’s doing so well, I hate to give him the medicine…’ exactly how I feel EVERY time we have a few weeks off! Of course we went ahead with his treatment.
He did well during treatment this week. He ate a big lunch, stayed awake the whole time, babbling and squealing at his nurse Amanda, and had no allergic reactions! By the time we were ready to leave he was beat. he slept the whole way home, as usual, and could barely stay up till bed time. He was a bit shaky and uncomfortable already last night, which was really hard to see after he had been doing so well. Also his nystagmus came back as he got more tired. I guess it is safe to say this is a chemo related symptom. He was pretty nausea first thing this morning. The zofran doesn’t seem to be working as well, lately. Maybe since he has grown so much it is time to adjust his dosing??? Thankfully a few hours after giving him his meds. he was able to eat a little breakfast.
The rest of the week looks pretty quiet so far. He has had no early intervention, acupuncture or volunteers this week. Today we will be working more on his blended food for his tube (I have a feeling he wont be eating much by mouth this week). We’ve got lots of Christmas left overs to blend up and a bunch of bones to start stewing. We have also been working on smoothies for his bottle to replace some of the pediasure with real food. So far he seems to like it.
Addie, Meg and Luke were also at the clinic yesterday. It was great to spend some time with them and catch up. Addie wasn’t so happy when I walked in the door to their room (she has been very fearful of people at the hospital lately, who could blame her!), but she sure did light up when she saw Kai! It was so great to see her smile. She was reaching out for him and blowing kisses, so sweet! Unfortunately they got some not so great news yesterday and will likely be starting another treatment in the next few weeks. Please keep them in your thoughts and prayers!
Hoping you all have happy healthy safe New Years celebration this weekend. We plan to have a relaxing quiet few days at home! The exciting life new parents 😉
(do we still count as ‘new’ parents??? I think so!)
One thought on “just another day”
I know it is hard to see your little guy go from feeling great to not so great because of the meds. The only thing that comes to my mind is that it is obvious it is the meds that do him in and not the illness. This shows you how much of a fighter he really is. I am thinking of all of you this New Year and hope that you had a wonderful Christmas together. I hope to see you real soon.