Tonight at bath time Bianca asked to play Eye Spy. She likes to play it according to the letters of the alphabet. So she will say "Eye Spy with my little eye, something beginning with an A" and then I would have to continue with "B" and so on. Then when we got to "I" she told me "...like ice that you put on your leg to numb the face when you get an injection" - she referred to the time when she got 6 injections (one every second day) and Jo would draw a face on her leg so we would know where to put the ice to numb her leg.
On Friday, Kate the play specialist gave me a wonderful kit on how I could teach Bianca to swallow tablets. For the next 2 years at least Bianca will have to swallow tablets pretty much every single day. Sometimes more than once a day. Bianca absolutely loves working with this kit. In fact, when Kate brought the kit to us, Bianca wanted to start immediately.
So the past few days we have been working on the suggestions Kate included in her kit. And today I managed to convince Bianca to actually swallow her Dexamethasone. It took a good 5 minutes, but we managed in the end. And then tonight we had to do her mercaptopurine (a chemo) and she did it all in a matter of 5 seconds! She is just so proud of herself and she makes me so proud as well!!! I am so happy that it took so much quicker than I thought it would.
Sanna also came back from her trip to the South Island. Bianca was so very happy. I think she really missed Sanna. It was pretty hard to try and explain that technically Sanna was still on holiday.
Today was actually a pretty good day. Bianca wasn't really clingy tonight, just a bit tearful around bedtime. And I'm still waiting for the huge appetite to arrive. When Bianca first went on the Dex she was constantly asking for food, but tonight she just asked that I put a snack pack next to the side of her bed and that it should be marmite sandwiches. But tomorrow is Day 5 of the steroids and I'm hoping that the past 4 days now at the start of our maintenance is a sign of things to come, of how it will be for us. But we never know, and for us Dexamethasone has always been a bit of an unpredictable one.
All we can really do is hope that one good day will follow another.
On Friday, Kate the play specialist gave me a wonderful kit on how I could teach Bianca to swallow tablets. For the next 2 years at least Bianca will have to swallow tablets pretty much every single day. Sometimes more than once a day. Bianca absolutely loves working with this kit. In fact, when Kate brought the kit to us, Bianca wanted to start immediately.
So the past few days we have been working on the suggestions Kate included in her kit. And today I managed to convince Bianca to actually swallow her Dexamethasone. It took a good 5 minutes, but we managed in the end. And then tonight we had to do her mercaptopurine (a chemo) and she did it all in a matter of 5 seconds! She is just so proud of herself and she makes me so proud as well!!! I am so happy that it took so much quicker than I thought it would.
Sanna also came back from her trip to the South Island. Bianca was so very happy. I think she really missed Sanna. It was pretty hard to try and explain that technically Sanna was still on holiday.
Today was actually a pretty good day. Bianca wasn't really clingy tonight, just a bit tearful around bedtime. And I'm still waiting for the huge appetite to arrive. When Bianca first went on the Dex she was constantly asking for food, but tonight she just asked that I put a snack pack next to the side of her bed and that it should be marmite sandwiches. But tomorrow is Day 5 of the steroids and I'm hoping that the past 4 days now at the start of our maintenance is a sign of things to come, of how it will be for us. But we never know, and for us Dexamethasone has always been a bit of an unpredictable one.
All we can really do is hope that one good day will follow another.
Medicines today:
- Dexamethasone - 2 tablets twice a day
- Mercaptopurine - 1 tablet a night
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2 comments:
Wow, that is so fantastic that Bianca can swallow pills. That is a real achievement. I know even some adults can't do that( eg my husband). We found that the steroids didn't really effect Pete in Maintenance (so far anyway), at least they are half strength of in DI. Hope things keep on going well.
take care,
Bridget
Wow! What a great job! I would love the secret, Elias will not even consider swallowing a pill. I say congratulations to mommy and Bianca- you should both be very proud.
www.caringbridge.org/visit/eliaswaymire
Heather Waymire
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