Jaidyn's Deal with Dr. Rod

Today was another clinic day for Jaidyn, where she would be getting an LP and possible blood transfusion if her levels were low. Pretty routine for us for the last few weeks.


I was worried to see Dr. Rod given that Jaidyn still hadn't been ate anything over the last week. And by me saying she hadn't ate anything. I mean it. I have no clue how she is able to be so energetic with NOTHING in her stomach. But the nurse and dietitian have reassured me they see it quite often that once off the steroids kids just don't want to eat.


She also is still not taking her medicine very well. The 6-MP is a little easier than the antibiotic that she takes twice a day, three days a week. She hates that one and always has, but never used to spit it at me. So we have also wasted a lot of that. It was on the top of my list to ask Dr. Rod if there was any other flavours for that one.


The LP was fine, she was kind of loopy after the Ketamine. My favourite part is the big smile she always has on her face and how she tells me she went swimming. (The room is painted like an under water scene)


I thought today would be a quick day since she didn't seem too lethargic over the last week, but I was surprised to see that her hemoglobin was on the low end of normal even after getting a transfusion last week. Dr. Rod asked me if I thought we should transfuse her and I opted for yes as it does usually make her feel much better and she sleeps great after it. So now we wait for blood. (which by the way takes FOREVER)

Gluing

Trying to trick her to eat chips

Putting in her hours at the ice cream shop.

So while we wait, Dr. Rod wants to talk us in his office. And by "us"I mean Jaidyn. He sat there and had about a 15-20 minute conversation with Jaidyn about the importance of her medications and how she needs to take them to feel better. And if she wants to stay at home and not be admitted to the hospital she needed to take them nicely for her mommy. Its amazing how responsive a child is to someone else talking to them.


Dr. Rod then went on to make a special deal with Jaidyn. He told Jaidyn that at the end of the two year treatment, if she takes all her medicine like a good girl that she would get a wish. A wish for ANYTHING. A wish that he suggested she should choose something like fully paid trip down to Disney World for her entire family, where we would stay in the best Disney Hotel and have breakfast with the Princess's every morning and not have to wait in any lines and get all the special treatment she deserved. But ONLY if she took her medicine like a good girl.


I looked over and her eyes lit up and she said "and I can see Mickey Mouse?"


To be honest I don't know who was more excited about that, me or her!

So happy about Disney

So for the next two years Jaidyn has to nicely take all her medicine and not give us any trouble. She made a point to tell all the nurses for the rest of the day that she was going to go see Mickey Mouse IF she took her medicine.


I'm not quite sure if she grasps that its not for another 2 years. But still, she's excited.


She was so exhausted by today that on the ride home, with her treasure box treats in hand she passed right out.

Tonight was the test if she was going to stick to her end of the deal and of course it was still a struggle but we managed. And immediately after she took it she said "Mommy text Dockar Wad (Dr. Rod) and tell him I took it like a good girl!!"


Dockar Wad is the best Doctor EVER!