I mentioned in the last blog that Scarlet had a week of procedures and appointments. Here she is on Monday for the 9 hour visit at Children's Hospital. She was having another kidney test called an Iothalamate. It requires fasting from solid foods and milk, all she could eat or drink were clear liquids and jello. She doesn't like Jello so even though she couldn't eat anything she still only ate maybe one container of Jello all day. It also required 4 finger pokes. The first one she had she fussed and cried a little and then she tilted her head and watched as they juiced her finger to fill the 2 vials ( it really wasn't a lot of blood, but it seems that way when they milk your finger forever). They couldn't draw from her port because the medicine was infusing there and they needed a separate blood source to get accurate results. It took a week and a half to get the results back and they are excellent! She had a GFR Kidney function rate of 58% last year and her kidney function is now at 86%, much better! The doctor said on the message that he couldn't explain the good results but that they are very happy she is improving so much.
Thanks for all the prayers!
We had appointments everyday following and each became more and more difficult. Scarlet had a bone marrow biopsy on Wednesday and I was 9 minutes late because we were coming from Lakewood and still had to check in and park, etc. They made us wait 2 hours with Scarlet fasting for a 15 minute procedure. I kept checking with the desk and they kept saying 20 more minutes and finally I asked the receptionist to get someone to come and talk to me and tell me what the heck was taking forever. The lady that came was a family rep and she told me this blah blah story about us being 9 minutes late and so we got bumped and had to wait. I kind of had a little melt-down because this was our 3rd day of driving back and forth from Lakewood to Seattle and being at the hospital all day. The day before we waited for 2 hours for the kidney doctor appt and Scarlet was a mess by the time we finally got to see her and then now we had to wait another 2 hours and she was fasting. So, I got emotional and told her that she couldn't use us being late by 9 minutes as a reason to bump us because last time I was an hour early (I got my times mixed up) and they still made us wait an extra hour. I told her that it wasn't right to make a little girl fast for so much longer than was really needed for a 15 minute procedure. I didn't win my case, but we did get in 30 minutes later...it could have been longer if I hadn't talked to her, I dunno. That was the first time I've ever lost it at an appointment. Anyway, the marrow results came back amazing! If you can remember the first draw they did last year came back with cancer-like cells, the second draw in December looked like there were still abnormal chromosomes but not cancerous and now there are NO abnormal chromosomes to be found. We are so blessed! I'm grateful everyday for how well she is doing.
So, after the long week of appts. we went to the Zoo and my mom paid for us to ride the camel.
That was pretty cool, except I was hanging on for dear life to Scarlet because I was afraid the camel may do something unpredictable and she fall on her head.
We also got to go to a Mariner's game on Father's day as part of Seattle Kid's day,the Gift of Immunity guild hosted it. We got lots of fun stuff, ate BBQ while the team warmed up, and best of all we were able to meet a family whose daughter had the same diagnoses as Scarlet and had her transplant only a month after her. Her name is Madison, and she is doing really well too. Her donor was a sibling, so that's the best you can get.
I told you it was a long week... :) This was actually before the week started...but I was getting ready for the long week.
My sweet little princess is doing so well. Thanks for all the prayers and thoughts over the past 2 years. Not a day ever goes by without us giving heartfelt thanks to our Father in Heaven for our little miracle.
Scarlet's first experience at a public swimming pool. She loved it! I thought for sure she would be a natural chicken like me (but I actually love the water) but she was all about the swimming pool.
Dad got to come the second time around and we all had even more fun than the first time. We love hanging out with Charlie.
I love her whole get-up. I thought for sure she wouldn't get sunburned with all of this on, but her little exposed arms were a bit bright when we got home.
I love this picture of Charlie and Scarlet, they are at the Japanese garden near our home.
A little sun-blurred, but still pretty cute. She needed to have her shades and pink purse for the outing.
