I'm logging a quick note here, while it's fresh. We spent a good portion of the day at Sick Kids' hospital today, doing more follow up appointments. Last week, Isla saw the urologist - no kidney stones and no deterioration of the kidney. Hooray! They are not interested in having a VCUG (voiding cysto-urethrogram... xraying her while she voids) - which is great news. But the kidney specialist wants one, so we will need to explore if she really, really needs to have one done. If she does not have one done, they will not know for certain if her renal reflux is gone and we would have to watch like hawks- any signs of infection or fever, and we'd have to hoof it into the hospital right away. BUT it is such a traumatic test, and invasive, so they don't like to do it unless necessary. Last year, you could hear Isla screaming down the hallway - and the other kids too. If we can avoid that kind of circumstance, I'd be happy.
Today, she saw the endocrinologist - or calcium and bone specialist. For the first time, her calcium levels are in the normal range!!!! Such good news! So, we will challenge her, by giving her more calcium - 250mg daily or 1/2 the daily amount a child her age requires. In four months, if her levels are still normal, she will be able to go to eating 500 mg daily, with no restraints. If she goes back to high calcium levels again, we will have to restrict her calcium once again. Meanwhile, we need to continue with the reduced Vitamin D supplement daily.
Before going to the calcium and bone specialist, Isla needed to have bloodwork done and a urine sample taken. Since she is not yet potty trained, this is an UGLY process. Putting a bag over her is like trying to nail down a feather blowing in a hurricane. So, Jacques came up with a brilliant plan.
We have bags at home. Jacques custom-designed one of her diapers to fit a bag through it. When he changed her diaper, he put on the specially-prepared diaper and it wasn't until the last second, when Isla felt the tape/ glue go on, that she realised what was happening. By then it was too late. So, we made a big fuss about it, and created a game surrounding having this special diaper on . Within 1/2 hour, she had deposited a decent amount and we were off to the hospital. Daddy watched over that sample like a mother hen supervising her eggs. The nurses and receptionist were very impressed and VERY happy. Usually, we cannot get a sample at the hospital, have to do it at home and then drive in the sample a few days later. Getting it done today meant we had some information processed already by the time of our appointment. Kudos to Jacques!
Now, taking blood is another matter. Isla remembers the room and as soon as she walked in, she started saying, "Ow, ow, ow". She was very worried when I put her on my lap. And the awful thing is that the technician kept changing just before they took her blood. We had to wait for the paperwork, and just before it arrived, the technician went on break. Someone else stepped in and started to prepare, when another technician came along and insisted on doing it. Meanwhile, poor little Isla was worried, saying "ow" and "all done" and starting to cry. When they finally got organised, it took 3 of us to hold her. Poor little thing. The 5 minutes it took, instead of the 1 minute was agony for her. She calmed down afterwards when we suggested getting hot chocolate at Tim Horton's!
Isla's weight is low... in the past 7 months, she has gained only 1/2 pound. Hopefully, with permission for her to eat more dairy, she will put on more weight. The dietician and I discussed more options for putting cream into her diet. Next week, we will see her pediatrician and see what he has to add about her weight and height.
We also popped into see the orthotics technician who designed Isla's helmet last year and monitored her progress. She has not seen Isla in one full year, and was so happy to see how her skull has formed and to see her chattering and running up and down the halls.
Soon, we will take her to the nephrologist - kidney specialist - and hopefully, Isla will graduate from seeing him too. He will check the status quo of her renal reflux and make decisions about the antibiotics she has been taking for one year now and what' s next.
Must dash and get some shut eye....